Lisybabe's Blog

♫...When I look at the television, I want to see me staring right back at me...♫

2012-01-02T15:46:00.005Z

Been doing some media whoring the last few days talking about the blue badge reforms that came into effect yesterday.

First there was BBC Breakfast on the tellybox. This was followed about 15 minutes later by Five Live (the beeb getting the most from the money spent on having a car take me to Television Centre):

BBC Sussex/Surrey (they were both broadcasting the same show today) heard Five Live and subsequently wanted me on their show this morning. What I didn't know in advance was that I'd be debating with transport minister Norman Baker MP. Here's what happened:

Gutted I didn't get to rebut his final speech. C'est la vie I suppose.

Thanks to @uwitness and @goldfish for tech help with making audio happen.

♫...The speed so fast I felt like I was drunk...♫

2011-12-19T11:23:00.001Z

In the late-ish 90s I was doing my A Levels for the bazillionth time (ever indecisive I couldn't just pick a subject and stick with it. I kept changing my mind, quitting that subject, and starting something different the following September). Text messaging was the new cool thing and I loved it. Struggling to understand what people are saying when I can't see their lips move meant that mobile telephony was difficult: When you're having a conversation with someone and you're both in the relatively background noise-free environments of your home it's fine, but roaming communication meant people would phone from the pub while you were in the supermarket and the background cacophony drowns out any hope of following the other person's words. But texting... No hearing necessary: Communication on the go without me constantly shrieking "you what?"

The minute someone taught me how to send a text I was in love with the technology. I thought it was the greatest thing since sliced bread. Well, greater really: Slicing bread yourself isn't all that hard. It's certainly easier than decoding a drunk friend's speech at 3am when you've got APD.

My A Level theatre studies teacher was not a convert. She decried that such short, swift, exchanges would be the death of human communication. I, obviously, scoffed. How could such a wonderful idea opening communicative doors possibly be a bad thing?

I'm starting think that she might have been right.

Don't get me wrong, I'm a huge fan of texting, tweeting and Facebooking. Two weeks ago I was in a meeting and the chair tried to avoid using the word "twitter" because he knew I'd start proselytising. Again. But such speedy exchanges have altered the way we interact with each other and I'm starting to pine for the days when people were reliable.

I should say at this juncture that - yes - I know this post makes me a massive hypocrite. I'm well aware that I'm just as flaky as everybody else these days. I'm just as susceptible to life zooming past me as everybody else on the planet. But that doesn't mean I have to like it.

Everything being so immediate has its drawbacks as well as its merits. I like that I can tweet about a ludicrous conversation with a salesperson and have that company's customer services get in touch with me within a couple of hours because my tweet spread like wildfire. When I'm so ill that I can barely remember my own name I like that I can post one word answers to a question on Facebook without feeling a cultural obligation to ask "and how are the kids? Did your dog recover OK from getting his knackers whipped off?" (That last question especially doesn't go down well with someone who doesn't have a dog and you've just conflated them with someone else.)

I hate that not replying to people has become acceptable because it's just the norm now. With a few exceptions I've learned that if I haven't had an Email back from someone within about 6 hours of me sending then I'm not going to get a reply at all. Most notable exception was in May 2011 when I got a reply to an Email I sent in Dec 2008, but most people don't trawl through 2.5 year old Emails.

I think Twitter and Facebook have a large part to play in creating this environment of immediacy. I think we all follow/are friends with more people than more people than we realistically can keep up with. I don't get to see every tweet from every person in my twitter timeline any more because there's just too many tweets. I'd love to have a cull, or at least to stop feeling compelled to add more people, but there are just too many fucking awesome people on twitter that I just can't not follow. Even if it does mean I miss quite a few tweets from everybody because I just can't keep up: Keeping up with a fair few tweets of 198 people somehow seems more acceptable than only following, say, 100 awesome people but getting to see all their posts. Because I get an extra 98 people's worth of awesomeness, even if it's only intermittent awesomeness.

But this blasé attitude has spread beyond twitter into the rest of our lives. We check our Email and we deal with the really urgent stuff and leave the rest "until later". Except with us all being so in the present these days "later" never comes. The next time we check our Email we, once again, deal with the pressing matters while the "till later" stuff gets shunned to page 2 of your inbox and ends up forgotten entirely.

Blogging is much the same. It used to be the case that I'd read all the blog posts in my RSS feed reader. But now I, like everyone else, only read something if I happen to be online when it's posted because we're so present-focussed we don't scroll down any more. Seven years ago your latest blog post would get just as many hits if you posted it at 11pm on a Saturday as it would if you posted it at 11am on a Monday. Even if the hits didn't come in until Monday morning, the post would still ultimately get read. This is no longer the case. I find myself more and more advance-scheduling tweets and blog posts to be published at time when I know the internet will be busy.

All this means that we tend to keep repeating ourselves. When we write a blog post most people won't just tweet the link once and leave it; they'll keep on posting at different times of day to attract an audience. If you send someone an Email and they don't reply you're faced with the choice of having to either just forget about it or chasing them up. I really hate both of these things.

I can get really paranoid about being annoying. Most of the time I'm fine with it: My high-pitched voice, rapid speech, and opinionatedness do not endear me to the masses. Usually it's my conclusion that they're arseholes for not wanting to listen to me. But sometimes, when I need someone's help, I can't just say "oh, fuck it. I won't chase them up." And when I have to chase someone up I become acutely aware of how annoying I am.

(I should be clear that this isn't a self-loathing thing and other people find me not at all annoying; quite the opposite. I had no problem with being annoying until other people told me how grating I was. And they've told me that in great numbers.)

Welfare reform is currently making me crazy. Actually properly crazy. But I refuse to give up fighting just yet because I would actually like some kind of future. I know we've only got a few weeks left before my fate is doomed, but until that time I can't not fight.

This need to fight while extra crazy is just making my neuroses worse. If I Email someone who has got the capacity to be of some use in the fight against welfare reform but I don't get a reply, what should I do? Well, obviously, I should chase them up. My Email's probably fallen to page 5 of their inbox by now and is never going to get a response unless I do. But I really wish they'd reply of their own volition and save me the time spent sat in the bathroom, in the dark, rocking back and forth repeating "oh God, I'm a terrible person. Oh God, I'm so annoying. Why do I have to be such an awful person? Oh God I'm such a bad person. I wish I wasn't so annoying."

And as for repeatedly tweeting the same thing over and over just to get the message out to people who happen to be online at different times of the day: It'd be interesting to do an experiment to see if people found it easier to keep up with all the people they follow if it wasn't the norm for everyone to post the same thing several times. I don't need The Huffington Post to tweet the link to the same article 3 times in as many hours, and if they didn't then perhaps I might have caught the tweet in which a friend was having a crisis.

My main problem with repeatedly tweeting the same content is, again, that I can't do it because it sends me into mini-meltdown about being too annoying. I have few enough followers as it is without boring the few I've got into abandoning me because I just post the same shit again and again. And giving someone an @ message requesting a retweet is another behaviour that'll make me weep with guilt if I try it.

I'm a big fan of the technology that allows us to communicate so instantaneously. I love that I can have these swift non-verbal interactions with anyone anywhere in the world. Twitter and Facebook are so valuable to me as a poorly person. From May to October this year I didn't write anything longer than a tweet because I just wasn't well enough. But these short, rapid, interpersonal exchanges saved me from being completely isolated in that time. You can tweet using your iPod in bed, you can tweet from a hospital waiting room, you can even sometimes get sufficient signal in the hospital basement to send a text between x-rays. You can check Facebook while waiting for your pharmacist to dispense your vast quantities of medicines. Last week was the 3rd anniversary of my mum's death. One of the first things I did when I stopped screaming that night was to tweet the fact because I wanted support from my friends around the world.

It genuinely makes me quite sad that my old teacher turned out to be so prescient about the death of communication; or at least the death of quality communication. I'm a big fan of short, rapid exchanges you get via text or on Twitter; but did we really have to abandon "old school" replying to Emails and so on? Have we as a species become so wrapped up in our fast paced 140-160 characters world that we can't find the time in our lives to read/write anything longer? Have we become so present-orientated that we really can't reply to any Email sent more than 6 hours ago. Even if it's a really important one?

Stop this world. It's spinning too fast. I want to get off.

♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫

2011-12-02T11:00:00.021Z

There has been much talk over the last few months about the irony of Atos doing the computing for next year’s Paralympics. People thought things were getting even odder when Atos founder Bernard Bourigeaud joined the International Paralympic Committee (IPC) board.

Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.

As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.

All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.

The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.

The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.

People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; and SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.

After years of training I made it into the GB team for the Europeans’ in 97. I went out as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!

Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.

They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.

You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.

Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.

The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).

My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.

For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.

(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)

Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.

Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).

Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.

♫...So come on let me entertain you...♫

2011-11-21T22:40:00.000Z

Nine years ago an old friend sat on his living room floor and uttered one sentence which would change my life. Yesterday I saw him for the first time since that night.

In July 2002 I was doing a week's work in a school back home in Cambridge. It was after my parents had moved from Cambridge to the arse-end of nowhere so I crashed at some friends' house in Ely for the week. One night I was in the pub which had kinda been my local for the last year I lived in Cambridge; when in walked someone I'd gone to Long Road with about 6 years earlier and had not seen since.

He was living in Brighton at the time and was also on a fairly fleeting visit back to Cambridge. After lots of talking we agreed that I could stay at his in Brighton after Pride the following month.

So the night of Pride in 2002 we sat in his living room talking half the night and getting even more wasted than we already were. I mean so wasted that on the train the next day I was grateful for those shitty old trains where wheelchair users had to sit in the guard's van out of sight of all the non-disabled passengers. No-one could see how green I looked and I could occasionally whimper because there was no-one around to hear it.

At one point I said something that made him laugh: Made him laugh so hard that he fell off his chair. Once he'd regained enough composure to be able to speak he said "you should do stand-up."

I don't remember what I said, but I'm sure that under the harsh light of sobriety it wouldn't be remotely entertaining. However, his remark sparked a thought process in my head that I couldn't shake off.

I'd been a fan of stand-up for a long time. Like most people my age, my introduction to comedy was The Mary Whitehouse Experience. The first time I saw it, aged 12 at a sleepover at a friend's house, I remember laughing so hard I couldn't breathe: It was the single greatest thing I had ever seen. In 1992 Both Newman & Baddiel and Punt & Dennis toured the UK and played at the Cambridge Corn Exchange. I remember Newman & Baddiel came to town in April 1992; my 13th birthday was in May and I begged so hard for tickets as an early birthday present. That gig was the first time I saw live stand up, and was followed about 2 months later by seeing Punt & Dennis. Having had my appetite for stand-up whetted I saw several other comics off the telly when they came to town like Jo Brand and Jack Dee. And, of course, Newman & Baddiel and Punt & Dennis a few more times.

I'd always loved performing but the thought of being a stand-up had never crossed my mind. I actually kinda thought that being that funny was like a superpower and it wasn't something that regular people could do. His comment triggered this niggle in my brain that "well maybe I could do it?"

I spent the next two years procrastinating on the idea, while seeing loads of comedy. I regularly went to comedy clubs, to see solo shows at theatres and I went to loads of TV and radio comedy recordings on account of them being free and me being a poor student. It wasn't unheard of for me to go see comedy 4 or 5 times in a week.

When I started doing stand up in November 2004 I very quickly realised that I'd found what I wanted to do with my life. I loved it. Of course, I'm the unluckiest person in the world so stand up dreams were shattered by illness.

I gave it up in 2007 when I became too ill too often to carry on. I was hoping that my health problems would only be temporary and that a few pills here, quick operation there and I'd be good to get back to it. So I decided to bow out before I alienated every promoter in the country. If you're booked to do a gig and you have to cancel on the day because it's a "spend the day in bed with a bottle of morphine" day then you're going to put that promoter in a bind. It doesn't matter that you're genuinely ill, you've left that promoter in a tight spot with a gap in their bill and only a couple of hours to fix things. So they're never going to book you again and are probably going to badmouth you to other promoters that they meet. Luckily the only promoters I pissed off with my health-related unreliableness were small fish rather than any of the really key national bookers. But it was only a matter of time.

It's looking increasingly like I'll probably never be well enough to work again. Kinda ironic really that the current political situation for disabled people in the UK has given me so much I want to say through the medium of comedy; more than I've ever wanted to say before. And the stories I want to tell are so shaped by being ill that I probably wouldn't have the same stories to tell if I was well enough to go out and tell them.

It was politics that led me to bump into him yesterday. I quickly popped in to the Bank of Ideas to check out the access so I could write it up on WtB. I'd been in the building only a few seconds when someone brushed past me and mumbled "Hi Lisa" as he did so. It was him; the guy who'd told me to do stand-up. We didn't chat long because I couldn't stay; this current infection had me feeling like I was dying. Honestly on the bus home I felt almost as nauseated as I did on that aforementioned train journey 9 years ago. We were catching up and he said "I know you're a comedian now..."

"And I have you to thank for that. Do you remember that night 9 years ago when I crashed at yours after Pride? I said something that made you fall off your chair laughing and you told me I should do stand-up."

He didn't remember.

♫...Tonight, tonight, won't be just any night...♫

2011-11-14T19:20:00.009Z

I had a problem with last week's episode of Glee. And for a change it had absolutely nothing to do with disability. I mean, obviously, there were a few awful stereotypes about wheelchair users because it wouldn't be Glee without them. My issue was actually about something even more sinister.

I've been asked why I watch Glee when all it does it raise my blood pressure. It's quite simple: The social politics of disability is one of my favourite topics. Television is another one. So representations of disability on TV is my specialist subject. And Glee is so awful and so offensive I watch it for the joy of ranting about how horrific it is. I need to get my righteous indignation from somewhere. And besides; my blood pressure is usually at the low end of normal, occasionally veering properly into low: Getting angry at the telly is probably good for my health.

Or at least, that used to be why I watched Glee. I'm gonna make a confession now and if anyone holds it over my head I swear I'll turn them into a human cannonball as part of a cheerleading display. And that confession is...

When Kurt and Blaine got together they absolutely stole my heart. They're just the cutest little couple. I started enjoying watching the show (or at least their scenes) and making high pitched squeeing noises when they were being all adorable. I think the last time I saw a telly couple so cute was in that episode of Torchwood when Jack met the original Captain Jack Harkness. (Which makes me wonder why the adorable telly couples are always gay men? Lafayette and Jesus in True Blood also stand out in my memory as sweeties. Where are the "awwwww" lesbians? Or even straight couples for that matter? OK, maybe Grissom and Sara were pretty sweet and my opinion was clouded by envy of Grissom because Sara Sidle is the woman of my dreams. Sure there's the budding Brittany/Santana romance in Glee; but Santana's a bitch and Brittany's a caricature: Hardly an "awwwwww" couple. Anyway...)

That Kurt and Blaine are just so adorable they can melt my cold, misanthropic, heart was what made one specific scene in The First Time (link contains spoilers) stand out as particularly horrific.

Double warning of both spoilers and triggers: Below the jump are both plot details for last week's episode and discussions of sexual assault.

The episode begins with West Side Story rehearsals. Artie (given the role of director because he's a wheelchair user. Reminded me of getting cast as narrator in school plays so no-one would have to see my unsightly mobility aids) explains to the leads Blaine and Rachel that the musical is about a sexual awakening and that their virginity is showing. So he basically tells them to go off and hump their respective boyfriends.

This starts a dialogue between Blaine and Kurt about sex when previously they've not "granted their hands visas to travel south of the equator." Although, actually, the scene where Kurt asks if he's sexually boring and Blaine says "no, we're still young" seems like it should have come before Artie telling Blaine to go get some.

Blaine pops back to Dalton to give The Warblers tickets to the opening night of West Side Story and meets his replacement in the group, a smug git called Sebastian Smythe, who immediately starts hitting on Blaine. It made me very happy to see The Warblers again. They're another thing I liked about Glee; I miss them now Blaine's at McKinley. A lot of the music in Glee is mediocre at best, but The Warblers are properly good. Keane bore the shit out of me, but their version of "Somewhere Only We Know" I really like. Their cover of Pink's "Raise Your Glass" is still my favourite song of 2011 so far.

Later in The Lima Bean Sebastian asks Kurt and Blaine to go clubbing with him the following night. Blaine is hesitant but Kurt agrees. The following night Blaine gets drunk while Kurt is designated driver. Blaine dances with Sebastian while Kurt sits at the bar talking to Karofsky. It was kinda sweet to see Karofsky back with him not beating people up.

It's when they leave the bar that things get awful. Kurt lays the drunk Blaine down across the back seat of the car saying "you're less likely to throw up that way." Blaine grabs Kurt and pulls him down on top and starts groping him. Kurt's response is initially a fairly light "Cold hands! Cold hands!" Blaine doesn't stop.

Kurt's next words are "No, no, no, no. Please, no. Just stop it. Stop. Stop." Before Kurt manages to extricate himself and crawl backwards out of the car.

I found this truly harrowing. It was really difficult to process: This couple that I've spent months going "awwww" over and one of them had suddenly turned into a monster.

Bizarrely the scene ends with Blaine storming off in a huff and Kurt calling out after him.

The next scene with the two of them is on the stage, after the opening night performance, with Blaine practising a dance move he got wrong in the show. The scene starts with them distantly and politely congratulating each other on their performances in the musical. Eventually Blaine apologises, but seems to lay more weight onto the apologising for dancing with Sebastian than on the "and you were right, our first time shouldn't be like that." Like that? With Kurt saying "no" you mean?

Kurt then says "Well it sure beats the last time you got drunk and made out with Rachel." WTF? I did a hell of a lot more than simply snogging members of the opposite sex when I was a teenager and drunk and trying to figure myself out. There's nothing wrong with a gay teenager trying to work out their sexuality by doing stuff with people of the opposite gender. Blaine was single at the time so it's not like he was cheating on someone by kissing a girl. If I had my time over I wouldn't change a thing; sleeping with boys when I was a teenager was an important part of becoming who I am. I'm not saying it's an essential for others; people have to work things out in their own way, but it was important for me. Most crucially of all: Rachel was consenting. She never said "no".

Kurt then apologises for being a silly romantic and not wanting to loses his virginity in a gay bar car park. What in the fucking fuck does he have to apologise for???

Blaine tells Kurt it's not silly and kisses him. At last a bit of sense from the writing room. This is then followed by Kurt gushing over how proud he is over Blaine. Sense gone. Blaine asks Kurt to accompany him to the afterparty at Breadstix and Kurt looks Blaine squarely in the eye and says "No. I wanna go to your house."

If you imagine the scene in the car didn't happen; if you imagine that they just had a fight over Blaine dancing with Sebastian then this scene on the stage is truly touching. You remember that they are adorable together and Kurt looking Blaine in the eye and delivering his final line would make the hairs on your arms stand on end. Except the scene in the car did happen and it's scary how easily Kurt forgives Blaine.

I understand the point of Kurt and Blaine having a falling out mid-episode. The basic romance narrative is catalysing event → conflict → resolution. If you think about a film like Pretty Woman the couple meet, things plod along for a while. Then the couple go their separate ways and the film ends with them coming back together for a happily ever after. Looking at the romance films I can see on my DVD shelves from where I'm sat they all follow the same pattern: When Harry Met Sally, But I'm A Cheerleader, Dirty Dancing, etc.

TV is an ongoing thing so the catalysing event in this episode wasn't Kurt and Blaine meeting; it was Artie telling Blaine to go get laid. The conflict was created by introducing Sebastian and the resolution was Kurt and Blaine getting into bed together at the end of the episode. The sexual assault in the car was utterly unnecessary to the narrative.

Unrelated to the disgust at the car scene: How awesome is it that we now have 2 gay teenage boys getting in bed together on primetime American network television? Yeah, OK, they don't do anything besides rub noses, hold hands and stroke shoulders but, still: 14 years ago many network affiliates refused to air an episode of Ellen because she merely said "I'm gay."

Glee is really popular with young people. It's frightening that they have a main character assault the guy he's in love with. It's frightening that Kurt not only forgives him so easily but jumps straight into bed with him. What on earth kind of message is that sending out to young people about appropriate sexual behaviour? Abused partners tend to put up with abuse because "s/he said they're sorry, and I know they love me really." This episode normalised and made that behaviour acceptable, even if it's a one off and Blaine never behaves in such an abhorrent way again.

I wish someone would pass me the brain bleach so I could erase the scene in the car from my memory. So I could just imagine they fought over Blaine dancing with Sebastian. So I could go back to thinking "awwwww, they're so adorable." So I could get rid of this horrid metaphoric taste in my mouth over Blaine's behaviour and Kurt allowing himself to be used as a doormat.

♫...Take the National Express when your life’s in a mess, it’ll make you smile...♫

2011-11-08T21:21:00.002Z

On October 9th (yes, I know it's taken me nearly a month to write this up, my health sucks) I took part in UK Uncut's Block the Bridge, Block the Bill protest.

Just like the last UK Uncut thingum I went to; I did a few funnies. Only this time the fab @miggiuk filmed it:

I apologise for saying "erm" and "you know" quite so much. You have to remember it's more than 4 years since I was forced to give up comedy due to illness so I'm rather unrehearsed these days. Miggiuk filmed all the comedy and put it on YouTube so after my ums and ahs go watch some other people who are properly funny as a palate cleanser for the soul.

There's a transcript below the jump. I'm afraid I don't have the techno know-how to turn that into synchronised subtitles on the video itself so if anyone does then please let me know.

♫ = National Express by The Divine Comedy

Chris: ... We’re having a good time. In the meantime let’s bring Lisa Egan on. Oh an absolutely fantastic comic you’re gonna love her. Can we get some applause from this side?

[Applause]

Can you do better over there?

[Applause]

That’s how you applaud. Put your hands together for Lisa Egan!

[Applause]

Lisa: How’s this for an ironic juxtaposition?

[Laughter]

I would usually start by apologising to anyone that was uh... Oh God, I think I’m in front of a speaker.

[Inaudible man]

Lisa: Uh, please, yeah, because I sound like I’m shouting into a baked bean tin

[Slight titter]

Lisa: *squeals* Ewwww... Squeaky! Umm...

Several members of the audience: Move the speaker!

Lisa: [Something inaudible then] Hooray!

Crowd: Woohoo!

Lisa: You can hear me now without that awful metal echo. [Feedback returns on “echo”] Oh shit.

[Laughter]

Lisa: I’ll just talk. Excuse the high pitched shrill... And then there’s the speaker as well. So I would usually start off by apologising to anyone that’s upset about the fact that they came out to see stand up comedy.

[Laughter]

Lisa: But actually given the nature of today’s gig, um, I would like to be thankful for this. Erm, I would like to say “thank you” to the NHS’s wheelchair service for allowing me to be here today.
[Cheers and applause]

Lisa: Because without the NHS’s wheelchair provision I would not have been able to get out of my house.

I should apologise if I’m a bit rusty at this. Er, I used to be a stand-up comic a few years back, um, and then I got sick. I’ve always had my mobility impairment that you can see, um, but until about six years ago I was perfectly healthy and I was free from illness. And now I just spend most of my time laying on the sofa, off my tits on extremely strong painkillers. And, er, you know, just vivid hallucinations, and I’m actually wondering if – right now – I am on my sofa, off my tits...

[Laughter]

Lisa: ... On extremely strong painkillers. This might be slightly more intimidating than the time I thought I was being chased around Kings Cross station by an angry kangaroo.

[Laughter]

Lisa: Um, er, I take a lot of medication, erm, for which I’m also grateful for the NHS for. Er, you know, on a good day I take about 15 different drugs and on a bad day I take many, many, more. This is honestly true; this absolutely happened: Facebook suggested my pharmacist as a person I may know.

[Laughter]

Lisa: [chuckles] Um, er, I went to see my GP on Wednesday because I’m having a bit of a situation where there are drugs I should be taking, drugs the NHS will pay for, and then there’s me stuck in the middle. But, um, my doctor said... Oh, and this is before the cuts kick in that I can’t have the tablets that I need. And, er, my GP said “OK, while you’re here I wanna do an asthma review.” Presumably to check I still had it, I dunno.

[Slight titter]

Lisa: But, er, for those of you that aren’t asthmatic: The way that they measure how good you are at breathing, um, is they make you blow into a tube about the size of this microphone and it’s got numbers down it that gauge how good you’re doing at the breathing thing. So I did the thing and my doctor inputted the numbers into his computer, and he told me that I’m better at blowing than his computer thinks I should be.

[Slight titter]

Lisa: It’s ironic cos I’m gay.

[Laughter]

Lisa: So, yeah: Gay, disabled, female. I have been told on many occasions that it’s a shame I’m not black.

[Laughter]

Lisa: Um, er, not so long ago I was at the Royal Free in Hampstead to get a splint for my wrist.

One lone voice in the crowd: Yay!

Lisa: I heard some “yay”s like... [microphone cuts out] Oh.

Cyclist powering the sound system: Sorry!

[One person laughs]

Lisa (shouting cos the mic has no power): I heard some “yay”s. Does someone work there? Or is someone, like me, a regular there? Or was I just hallucinating the “yay”s?

[Silence]

Lisa (using mic again): OK, we’ll take that as a “too many painkillers Lisa.” So, um, anyway: I was at the Royal Free getting a splint for my wrist and I noticed while I was there that there was a sign saying “community gynaecology this way.”

[Laughter]

Lisa: I don’t want my gynaecologic experiences to be a community based event.

[Laughter]

Lisa: You know, is this a portent of things to come with the NHS? You know... “Well we can’t let you see a doctor but we could offer you a consultation with the local WI.”

[Laughter]

Lisa: Um, so, like I said: I used to be a stand up comic but now I’m just a professional poorly person. So I have to live on disability benefits... You know; the ones that are being cut. Um [stutters] it was a few years ago, erm I think it was 2008, The Observer sex survey found that 70% - that’s seven zero – 70% of people would never shag a cripple. Now this government with their cuts to disability benefits are obviously trying to do something about this. Because with the cuts so targeted at us they’re just fucking us all.

[Laughter and applause]

Lisa: As you can see I’ve recently been to SpecSavers: And the only reason I could afford to do this was because living on benefits I get subsidised NHS eye care; for now anyway. Um, but, er, it was a day of, you know, it was quite a traumatic experience actually because she told me that I have not just one but two visual defects that require correction by glasses. Firstly I have a condition called “hyperopia” which is just a fancy word for long-sighted. But when she told me I wondered why she was giving me glasses and not Ritalin eye drops.

[Silence]

Lisa: That went down about as well as my last girlfriend. Brilliant.

[Some “waheys”]

Lisa: And the other visual defect that I have is called “astigmatism”; it means my eyeballs are rugby ball-shaped. Um, but I’d not heard the word before and so when she told me my immediate reaction was “oh God! My hands and feet are going to bleed every Easter!”

[Laughter]

Lisa: Which is the last thing I need with the NHS hanging on a knife edge. But I think I would probably be OK because I am an atheist; and the reason for that is because I’m disabled, uh, because I’ve heard that there’s a stairway to heaven.

[Laughter]

Lisa: Thank you so much. I was telling the truth: I haven’t been able to do this for years because of my health so I’m just really happy that you’ve laughed. It’s so good to see so many people out today to defend the NHS that I depend on. So thank you so much.

[Cheers and applause]

Chris: Lisa Egan ladies and gentlemen!

Ricky Gervais and the politics of Mong

2011-10-20T21:19:00.001+01:00

I've just realised how long it is since I last blogged. I knew I'd been ill for a while but I didn't realise it'd been nearly 6 months.

You know that feeling when you've eaten a huge, huge, meal (e.g. on Xmas day): You feel exhausted because all your blood has rushed to your stomach leaving no energy for the rest of your body to do anything. But at the same time you can't sleep because your digestive system is working so hard. And of course you can't force any food down because you already feel like you're going to explode. Normally the sensation only lasts a couple of hours until your system has made good progress of dealing with the oversized meal.

I've felt like that since the beginning of June. I've spent much of the summer depending on meal replacement drinks because I couldn't force any food down. I've had no energy to do anything (e.g. blog) because my digestive system has been being so irrational and I've also not been sleeping because of the digestive mania which has been increasing the sensation of exhaustion.

Despite the fact that I'd much rather be lazing, watching telly and eating Cadbury's Deadheads (because they're the only thing I've managed to eat today without ending up bent barfing over the bog within 60 seconds) I felt I had to quickly comment about this week's Ricky Gervais mong twitstorm. Everyone else is blogging about it and I just love a bandwagon.

It seems a lot of people don't know the origin of the word, so in a nutshell: It's an impairment-specific insult and refers to people with Down's Syndrome. In the 1860s Dr John Langdon Down decided to classify people with learning difficulties by "which country they looked like they came from" (really!) and he thought people with an extra 21st chromosome looked like they came from Mongolia so named the condition 'Mongolism'. (Later renamed after Dr Down because the Mongolians took offense.) So 'mong' isn't really associated solely with people with DS, it's also a slightly racist term with regards to citizens of Mongolia.

Gervais apparently thinks he has some kind of "right" to reclaim the word "mong"; despite the fact that - as far as I'm aware - he does not have Mongolian citizenship. He maintains that the definition of mong has moved on and it's no longer anything to do with Down's. Though that argument loses credence when you realise that 4 hours later he posted a tweet using the word "twongols", clearly derived from the term "mongols" further establishing the link between "mong" and the outdated diagnosis of mongolism.

It's been quite big news with most papers and radio shows discussing whether or not "mong" is offensive to people with Down's. I've seen quotes from Nicky Clark, Richard Herring and Christina Martin on the offensiveness debate. Odd thing is: They're all non-disabled. Don't get me wrong, they're all great disability rights activists and I value their contributions to making the world a slightly better place. I'm constantly pointing out how much we need non-disabled people to give a crap about disability issues. So I'm gonna repeat it and italicise it this time to really drive home my point: they're all great disability rights activists and I value their contributions. And I have no issue with them giving their opinions on these issues when asked for them.

But it's odd that when the subject is "is mong offensive to people with Down's Syndrome?" That the only people being asked for their opinion on the subject are non-disabled disability rights activists. Radio presenters would never ask "is using 'gay' as a pejorative offensive to homosexuals or has the meaning of the word changed?" Without including LGBT folk in the debate. So why aren't people with Down's Syndrome invited onto the radio to discuss how they feel about Gervais's words? Why is it only non-disabled people who are being asked for their opinion? That's the bit that bothers me; not that non-disabled people are giving their opinions, but that people with Down's are not being asked.

Not only is the exclusion of people with Down's from a debate about Down's almost as problematic as Gervais's original tweets, it also seems like a circular discussion that we'll never reach the end of. People without Down's can express their opinions but until we ask people with Down's Syndome "does mong offend you?" We'll never have a definitive answer to the question "is mong offensive to people with Down's Syndrome?" AOL can run polls asking the general populace their opinion but until people with an extra 21st chromosome are included in the debate it's all very abstract and inconclusive.

I'd be particularly interested to hear the opinion of actor Russell Ramsay who was in an episode of Extras so having worked with Gervais probably has an insight into both sides of the debate. (Random fact: When I was a child my parents would drag me kicking and screaming to church every week. I went to Sunday School with Russell. Haven't seen him in at least 20 years though.)

Despite the fact that we haven't yet got a conclusive answer as to whether or not people with Down's find "mong" offensive today (because they haven't been asked) the history of the word is clearer: It's historically a term of abuse and a form of hate speech. Disablist hate crime is on the up due in no small part to the bullshit rhetoric being peddled by the government and press in attempt to whip up support for welfare reform. People are getting called a "scrounging cunt" in the street or being followed down the road by someone shouting "fucking DLA stick" at them. That Gervais is using an historically abusive term so liberally and encouraging his fans to use it is pouring fuel on the already raging fires of hate. Ironically Gervais is calling people who disagree with him "haters" and stipulating that they only disagree with him because they're jealous of his success. If being successful means that you feel superior to members of oppressed minorities and have a licence to use abusive language then I'd rather remain unsuccessful but a decent human being.

♫...So scared of breaking it that you won't let it bend...♫

2011-05-06T16:06:00.003+01:00

There's an awareness day for everything these day. And so today is that day for my mobility impairment. Today is Wishbone Day, raising awareness of osteogenesis imperfecta.

There are lots of mythconceptions about OI around. Most notably the lies peddled in the dreadful M. Night Shyamalan film Unbreakable. Despite it being 11 years old, and you'd think most people would expel a film that dire from their memory, I still get people saying "oh, like in Unbreakable?" When they find out I have OI.

No. Not like in Unbreakable. For starters when Samuel L Jackson "explains" OI in the film he claims that type I is the mildest and it's a spectrum through to type IV which is the most severe and usually fatal at birth if not before (no mention of types V to VIII but I think at least some of those hadn't been discovered then). I am a 31 year old type IV. My mum who was also a type IV made it to 70 before dying from her familial predisposition to drop dead from heart failure at a reasonably young age. OI was not a contributing factor in her death.

It's actually type II that's fatal. Type III is usually pretty severe. Type IV varies from very mild to almost as severe as type III. Type I is different to the other 3 well established types. Bone breakage in types II, III and IV is the result of poor quality collagen. Collagen being the protein that provides reinforcement for bones. Type I is the result of a lack of collagen rather than the right amount of crappy quality collagen so it's quite different to types II - IV. There are type ones around who've had more fractures than me so to claim it's the "mildest" type is untrue.

There are many other inaccuracies in the film. By casting a non-disabled actor to play a person with OI he was, unsurprisingly, lacking all the physical characteristics of the condition. Elijah says he's had about 50 fractures; roughly the same number as me. Medical care of people with OI is constantly improving and Elijah was much older than me so he would've had worse medical care than I did when I did the bulk of my breaking as a child. Between not being very sturdy to begin with and then being constantly broken; bones with OI tend to bend. The bones in my right forearm have a bend in the middle of about 80°. The bones in my left leg are bent to about 30°. Had a I received the medical treatment a child with OI would receive today my bones would be less bent. They probably wouldn't be as straight as a person without OI's, but they'd be straighter than they are.

Elijah, being roughly the same as me in severity, should have bent bones. Bones bent more than mine because even less effort would've gone into straightening them. Samuel L Jackson not having OI has perfectly straight bones. Total credibility fail.

The other glaringly obvious characteristic fail is the eyes. Because collagen is the protein that makes the whites of your eyes white, most people with OI have blue scleras. Most, but not all. However, the people that do have white scleras are not type ones. Types ones always have blue scleras (like I said, it's different to the other types). SLJ does not have blue scleras. They could've made his scleras appear blue of course, in many films and TV shows you have demons and other monsters with completely black eyes. Tinting SLJ's scleras wouldn't have been too hard, whether through contacts or SFX in post-production.

So, yes. My impairment is nothing like Jackson in Unbreakable. Also, spending a lot of time in hospital as a child doesn't turn you into a terrorist.

Unbreakable isn't the only film to peddle poor facts about OI. Amélie is considered by many to be a piece of loveliness. It made me want to punch my TV screen. Amélie's neighbour with OI lives in a padded flat. Though perhaps I could do with his padded tellybox so that if I did end up punching it in frustration I'd be less likely to break my fist.

People with OI do not live in padded houses. There's no point. Breaking your bones is such a random thing. I've fractured my spine while sleeping on something soft and padded whilst conversely I've gotten drunk, fallen down a flight of steps in a club, and not broken a thing. Over-cautiousness can actually result in a reduction in bone density so living in a padded house can make you more, not less, likely to break.

I'm a big fan of forensic TV shows so obviously I watch Bones. OI has cropped up a couple of times, once just as a mention with regard to some ancient bones that Brennan had been looking at. In the episode "The Truth in the Lye" in season 2 they found some bones in a bathtub on a building site. Brennan looked at the bones under a microscope and noticed the lack of collagen.

The big fact fail here was with regard to reproducing. Bones said that in all the other types OI is the result of a spontaneous mutation but sometimes it's inherited in type ones. Hello! Type IV child of a type IV right here! And I'm not unique, I know tonnes of types IIIs and IVs who've had kids. When a person with OI has a child there's a 50% chance of the child inheriting it. Yes, OI is often caused by a spontaneous mutation. In the case of my family my mum was the mutant and I inherited it from her. But claiming that it's only type ones that breed is ludicrous.

The most common storyline when OI crops up in film and TV is that of parents being falsely accused of abuse. It's been done in Home & Away, ER, Casualty and many more shows.

It's an incredibly serious issue and unlike the other OI storylines I've mentioned it's one that's usually fairly realistically represented.

The Home & Away storyline was in the days when Pippa had a house full of foster kids. She fostered a child who'd been taken away from his parents because his recurrent broken bones had led to his parents being accused of abuse. Whilst in Pippa's care he broke his arm. Pippa took him to the local hospital where he was treated by a doctor who didn't sleep through the lecture on OI in her medical training. She diagnosed him and he was returned to his parents.

In ER Carter treated a kid who'd been brought in with a persistent cough. A chest x-ray revealed numerous broken ribs. Carter ordered full body x-rays and found that the kid had old and healed, currently healing, and fresh fractures all over. Carter called the police and social services claiming the mother had been beating the child. Carter performed a lumbar puncture on the baby and then took some more x-rays. Looking at the second set of x-rays Carter noticed that there was a new rib fracture not on the first set of x-rays and realised he'd broken one of the kid's ribs whilst doing the lumbar puncture. This resulted in him diagnosing OI and calling off the hounds.

In real life however, these stories don't always have a happy ending with the kids being returned to their parents. In some cases the children end up being adopted before diagnosis and adoption orders cannot be undone. Even when the child is returned to the parents it's often after the psychological scars of the child being fostered have been inflicted on both parents and child.

These days there are many diagnostic tests available for OI, there's no need for families to be destroyed. But it still happens because doctors don't think to check for it and social workers - in this target-driven post-Baby P era - don't mention it because they're desperate to whisk kids away from parents to meet their targets for kids fostered.

Wishbone Day could be a wonderful way to target doctors and social workers, to make them aware of OI, the clinical presentation, how to differentiate it from abuse, and how to test for it. But from what I've seen that level of awareness-raising aimed at the people who need it isn't happening. It's seems the thrust of Wishbone Day is "wear yellow and do the Facebook status meme," which isn't going to raise awareness amongst the people that need to be made aware. I'm aware that even this post picking apart media myths of OI is slightly redundant because it'll mostly only be read by people that know me so aren't gonna be taken in by Shyamalan's bullshit. So I'm being no more helpful to the cause than those who are simply changing their Facebook status and I throw my hands up and admit that. We need awareness targeted where it matters: A&E staff and social workers. Until that happens I think Wishbone Day is a bit wishy washy.

The #no2av campaign's preying on the uneducated

2011-05-03T21:20:00.001+01:00

I've just been talking to my dad on the phone. He has a postal vote so has already voted in the referendum.

My dad will be 77 in July. He grew up long, long, before disabled children had any right to be educated. He was ignored in mainstream school and then sent to a segregated college where he was taught nothing much. No-one taught him to read until a family friend took on the challenge when he was 21.

In addition to poor literacy due to no-one bothering to teach him until he was an adult he's almost certainly dyslexic. They didn't do much diagnosing of that during World War II.

In addition to that it's only been in the last 2 and a half years since my mum died that he hasn't had anyone living with him to help him understand things like the instructions on a polling card. He can read well enough to read the names on a card and identify which are his preferences. He can also count to three so would be capable of ranking his preferences in order.

One of the "no" campaign's loudest cries is that AV is too complicated for the masses. That you need to be some kind of genius to work out how to fill in a polling card under AV.

Out of fear that he wouldn't understand how to vote under AV; out of fear that AV is too confusing and too complicated, my father voted "no".

I am furious that the "no" campaign are preying on people like my dad by telling them they're too stupid to understand AV.

If my dad really believed that FPTP was a better system than AV I'd respect his choice. But that's not why he voted "no". The "no" campaign took advantage of his poor education, of his illiteracy, and his almost certain dyslexia by telling him that under AV he wouldn't be able to understand his polling card. They told him he was stupid and he believed it.

How many more people are going to be tricked into voting "no" because the campaign are preying on their poor education, their learning disability or insecurity about their intellect and telling them that they're just not smart enough to get it?

♫...Somebody tell me why I'm on my own, if there's a soulmate for everyone...♫

2011-05-01T21:09:00.009+01:00

Written as part of Blogging Against Disablism Day 2011.

"You could get a girlfriend, you just need to be more confident..."

...Is a sentence I hear all the time. And it's such a load of horseshit. Women want me about as much as they want a particularly severe case of haemorrhoids and all the confidence in the world can't change that.

On the couple of occasions in life when someone that I don't find attractive has told me they fancy me (I'm 32 this month and it has really has only happened a couple of times) I've been flattered. My ego has been known to break into a little happy dance. But whenever I tell someone that I think they're hot their standard response is to never speak to me again. I really am that repellent to others. It's not being unconfident when people really do think you're repulsive.

But also I'm not lacking in self-esteem; I would totally go out with me. I think I'm smart, funny, reasonably charismatic, interesting, I always smell nice and I enjoy my own company. If anything I'm over-confident to the point of being delusional because it's clear that other people do not view those characteristics in me.

I spent most of my adult life trying to look at the world through "people are innately not disablist bastards" tinted glasses. I wanted to believe that the only reasons people were so repulsed by me were because I'm fat, ugly and annoying. Then I read the results of the 2008 Observer Sex Survey in which 70% of respondents said they'd never shag someone with a "physical disability". And that's only the people disablist enough to admit it to the man from Mori with a clipboard. You can be sure that, actually, many more people would never do one of us but they're too ashamed to admit it because they know that being prejudiced isn't cool.

Accepting that most people would never go out with me because they're disablist was, in a weird way, an exercise in self-acceptance. It made me take off those tinted glasses and accept that the reason I'm perpetually single and haven't had sex for [mumblemumble] years probably isn't because I'm fat, ugly, and annoying (even though I am) but it's because they're discriminatory arseholes.

Of course there are many, many, disabled people in healthy relationships. They managed to find people from that 30% who aren't so prejudiced. With there being so few decent people around I presume that 30% can pick and choose from whoever they want because they're good people. Which does then kinda come back round to the "I'm fat, ugly and annoying" thing. If they've got the pick of the crop then they've got absolutely no reason to choose me.

With gay/bisexual women being a small sector of the population, and only 30% of them being willing to date me on grounds of my impairment there's only going to be a couple of thousand women in the country who would be willing to go out with me. Then you have to take away those that are in relationships, those that wouldn't go out with me because I talk too much, those that might be willing to see past my impairment but wouldn't date a fatty, those who might be willing to give me a chance but geography would make a relationship impossible, etc and there's basically about 12 women left in the country that might be willing to go out with me. And what are the chances that our paths will ever cross or that they'll actually fancy me?

You might think "but surely lesbians would be less disablist than straight people. After all, they understand and experience prejudice too?" Last year a friend cajoled me into trying online dating. It was not a successful experiment. So many women say in their profile "no crazies" and one even said "no strange limps". Disablism is just as ubiquitous among gay people as it is among the rest of the population. And then of course there's all the other reasons women wouldn't want to be with me; they're only interested in skinny women, they have a minimum height requirement (though in my case that's also disablism, my impairment is a form of dwarfism), etc. The experiment lasted a month. I gave up.

Because I've been single for so long people now see me as asexual. Yes there's the general cultural myth that disabled people don't do it, but the perception of me personally goes over and above that. People who know better than to be mythtaken (for example disabled people or people who are currently/have previously dated a disabled person) see me as asexual too. People no longer introduce me to their single lesbian friends because they just perceive me as someone that's alone in perpetuity.

Another area where I think disability/disablism is an issue is around "who is gonna wanna go out with someone who's ill all the fucking time?" You plan a lovely romantic evening out and at the last minute I'm too ill to go. I promise I'm going to cook you an amazing dinner and you get home from work to find me curled up in bed clutching the morphine and gibbering incoherently because I'm in so much pain. You get a cold and know you're going to pass it on to me and that it'll render me useless for 3 weeks because my immune system is so knackered. The only possible perk to dating me is that you know when I say "not tonight love, I've got a headache" that I'm really telling the truth.

If I'd been in a relationship with someone when I got sick I think it'd be a different story, I don't think they'd have dumped me for being ill. But when someone's out looking for their perfect partner is "chronically ill" really going to woo them?

Of course, being too ill to go out a lot of the time and being too poor to go out all the time (because my weekly income on benefits is £67 a week short of the amount recommended by the Joseph Rowntree Foundation for a minimum standard of living.) does mean that my chances of crossing paths with those aforementioned 12 women who might be willing to give me a go is even slimmer.

Another thing that makes me unattractive is that I'm not good at being what I'm supposed to be. There's partly the fact that women are supposed to be quiet and nice and lovely, and I'm loud and sarcastic and rude. But the main issue is the disablist notions of what a disabled person is supposed to be. Disabled people are supposed to be seen and not heard. We're supposed to be all smiles and not tell people who patronise us to "fuck off". We're supposed to be grateful for scraps of access and not complain when we're treated unfairly. We're basically supposed to look and act like we've just rolled out of a Children In Need appeal.

I do make myself heard. All the time. I'm extremely loud and outspoken. I will swear at people who belittle me. I will complain about bad access or poor treatment. I'm rude and sarcastic and misanthropic. Even as a child I was never cute enough for CiN. Instead of getting picked for "make a wish" type trips to Disneyworld, I got banned from school holidays.

Last year I was at an academic conference and one of the speakers was talking about academic theories of cuteness. It was so interesting. One of the things she pointed out was that things that are considered cute are often rendered impaired and she gave the example of Hello Kitty not having a mouth. Hello Kitty is considered cute in part because she can't talk back. I talk back constantly and in a society that says disabled people should only be tolerated if they're adorable I'm a pariah.

As if all this wasn't enough to guarantee me a life of chronic singledom, I'm socio-economically unappealing thanks to the government's benefits bullshit which means that the only women I could ever live with are someone who is also on benefits or someone who's rich enough to "keep" me. And as anyone who's ever met me can confirm; I'm independent almost to the point of self-destructiveness. Me being a "kept" woman would almost certainly result in bloodshed.

At the moment if I were to move in with a partner who had a job I'd lose my Housing Benefit and my Income Support leaving me with my Incapacity Benefit for any contributions to running of the household and anything I wanted for myself (like my addiction to Lush). I'd also still have my DLA to cover the extra costs of being disabled. Losing Income Support would mean I'd lose my free prescriptions, my free NHS dentistry and my subsidised glasses. So I'd be a moderate financial burden on my other half.

But under the plans for Employment and Support Allowance (ESA) I'd only get to keep the non-means tested bit (the equivalent bit to Incapacity Benefit) for the first year of us living together. Then my only income would be my DLA, which is already accounted for because disability is expensive. I would be a total financial burden on my partner. "If we move in together you'll have to financially support me completely," isn't going to win hearts.

A couple of months ago I was having dinner with my doppelgänger/clone/mini-me. She's planning to move to London when she graduates from uni. She said that my inability to get a girlfriend worries her. She'd assumed that being a lesbian in London was like being a kid in a sweet shop. I think that's a really good analogy...

Imagine you're staying at your diabetic dad's sugar-free house. You're lagging in energy, you've got stuff you need to get done and you need a sugar fix. You find a slightly dusty Werther's Original in the back of a drawer. It looks a bit gross but you eat it because it's that or nothing.

Imagine you're in a sweet shop. There's thousands of delicious looking sugary things wall-to-wall. In the corner you spot one lowly, dusty, Werther's Original. You wouldn't touch it with a bargepole when there are so many other wonderful things to choose from.

I'm that dusty Werther's Original. When I lived somewhere less well populated, and certainly with a smaller gay population, the odd woman was willing to go on a date with me. In London any lesbian has a plethora of women to choose from; so why on earth would she choose the sickly cripple who also happens to be fat, ugly, annoying, is rubbish at confirming to social rules and is a financial burden?

With 70% of people being too disablist to date me and the remaining 30% being put off by my looks, my behaviour that doesn't conform to the social roles expected of me, my being a financial burden or simply just not fancying me; how can those people who say "You could get a girlfriend, you just need to be more confident," really believe the words coming out of their mouths? Especially when I'm already confident beyond the level I should be given my lack of hotness?

It's quite depressing that with quite a high level of certainty my future involves dying alone and getting devoured by my 37 cats. There are lots of things that could change that, as a culture we could address the attitudes to disabled people that result in 70% of people being unwilling to shag me. We could fix the benefits system so I wouldn't be forced into being a financial drain on a partner. We could fix our social ideals of what a "good" disabled person is. But telling me to be more confident won't make any difference whatsoever.

Pride and St George

2011-04-25T20:30:00.003+01:00

If you've been hiding under a rock and not seen the flags everywhere, it might have escaped your attention that Saturday was St George's day; a day that's typically associated with racists and bigots, the EDL and the BNP.

This year I've seen several attempts from decent people to reclaim the day from the fascists, to take pride in England being the diverse place it is. After all, St George was Palestinian so he seems a bit of an odd role model for the EDL to revere.

The trouble is that I couldn't be less proud of being English.

Universities in England are charging ever increasing fees, this is not true for all other parts of the UK. The exorbitant amounts are a major disincentive for people from a background like mine to get an education.
English older and disabled people are having to pay more for less home care. This isn't true of all of the UK, Scottish older people get free care.
People living in care homes are facing bigger bills for less safe care homes and DLA recipients living in care homes will be losing their mobility component from 2013.
The government are completely dismantling the welfare state. Disabled people are killing themselves because they can't afford to live.
The government is planning to completely dismantle the NHS in England. I had one experience of NHS outsourcing to private healthcare providers; I waited a year to have my bust ankle MRIed.
Stories of police violence seem almost daily while hate crimes against disabled people are frequent and rarely appropriately handled by the authorities.
It's the 21st century and gay people can't get married.
The government is considering scrapping our anti-discrimination legislation.
We have misogynists, homophobes and disablists in parliament.
Our newspapers tell daily lies about benefits claimants, which results in an increase in the aforementioned disablist hate crime.

And that list barely scratches the surface.

You could argue that the decisions made by the government don't necessarily reflect those of the populace as a whole, that the lies printed in the press aren't emblematic of the opinions of the nation. Except they are. We're a democracy, we voted for this government. Look at the sea of blue across England. It's the English that voted Tory rather than other parts of the UK. As for the press? If people stopped buying the lies, the papers would stop printing them.

So could someone, please, tell me why I should be proud of England when England so clearly isn't proud of me?

♫... Pull up to the bumper, get out of the car...♫

2011-04-11T21:30:00.009+01:00

Our ever so delightful Mayor of London has come up with another plan to make the nation despise people who don't "look disabled" just that little bit more.

Writing in The Torygraph 2 months ago he proclaimed that the only people who really deserve Blue Badges are wheelchair users, which will no doubt pour further fuel on existing fires around who should be eligible for what.

If you spend much time hanging out in crippy areas of the web you'll come across debates around who it is that needs spaz parking spaces the most: In the red corner you'll have the walkies who need to park near to the door of a store because their ability to walk is extremely limited and if they can't park near the door they can't manage to do their shopping. While over in the green corner you'll have wheelies who need the wider bays to get their chair alongside their car to transfer into it.

In fact the walkies vs wheelies parking debate was even the B story in an episode of House a few years ago when a wheelchair-using researcher got a job at the hospital and Cuddy re-allocated House's parking space to her.

I should make clear that not all disabled people are so selfish that they think that only people with their flavour of impairment are genuine and everyone else is on the take; but sadly there are sufficient people so blinkered that they can't see someone else's perspective that it's a debate that'll go on for years to come. And BoJo just put his PomPoms on to encourage that battle. Presumably so disabled people will keep fighting amongst themselves rather than uniting and turning their energies against him around issues like all the tube accessibility upgrades he cancelled.

I see both sides of the debate: I use a wheelchair but I also walk a bit. Ordinarily when parking I need room behind my car to get my wheelchair out of the boot and assemble it. But there are occasions when I walk away from my car, like a couple of months ago when I had to go to the supermarket shortly after dislocating my shoulder. Walking is excruciatingly painful for every joint in my feet and legs - hence the usual wheelchair usage - but given the state my shoulder was in on that occasion, pushing my wheelchair would've hurt even more. To make the supermarket doable at all I needed to be able to park right by the door to minimise the distance walked.

However, even when I walk I'm still visibly disabled. I have an extremely pronounced limp, I'm of restricted growth and just one glance at my ankles will tell you that ankles aren't supposed to be shaped like that. But there are genuinely disabled people who are invisibly impaired who are no doubt who Mr J has in mind when he says:

the driver reverses into your spot and bounds out, whistling, remote-locking with a backwards squirt of electrons.

I don't remember him, he died when I was 2, but my granddad had an Orange Badge (this was long before they became Blue Badges in 2000) because his lung problems caused him to struggle to walk. Apparently for the first few steps after getting out of the car he looked quite sprightly. It was only after a few steps that the war veteran began struggling to breathe. But he would've been "looking normal" long enough to press the central locking button (if they'd had central locking in his lifetime) thus be the recipient of Johnson's suspicions.

Gardner and Johnson propose that wheelchair users get an extra badge and "special" bays that can't be used by non-wheelchair using disabled people. Would I need 2 badges, one for the days when I'm using my chair and one for the days when I'm not? Because I can walk a little bit would I be ineligible for the "W badge"? If so, then Gardner would be ineligible too; we've all seen him using a zimmer on the telly rather than his chair:

Boris also seems to have some trouble understanding who is actually eligible for a Blue Badge. He constantly refers to Blue Badge holders as "disabled drivers" and, yes, drivers do make up a significant number of BB users. But there are also a great number of BB holders who don't or can't drive. I think I was 5 when I got my first badge. The general minimum age has since been lowered to 2 but children younger than two can still get a badge if the child either:

must always be accompanied by bulky medical equipment which cannot be carried around without great difficulty, or;
needs to be kept near a vehicle at all times to get treatment for a condition when necessary

And obviously children that young can't drive! Then there are people who are old enough to drive but can't. My dad can't even push his wheelchair in a straight line at less than one mph, you wouldn't want him driving a vehicle that can do 100mph. Despite being driven everywhere by other people he still needs to park in Blue Badge bays because of the space needed to deploy the lift on his wheelchair accessible van. The argument of "but the driver could drop him off and then park the vehicle elsewhere," doesn't really work when someone takes as long to get out of the vehicle as my dad. Then of course there's people who can't be left alone while the driver parks the car somewhere else because they need constant assistance/supervision.

I do agree with Johnson that Blue Badge fraud is a huge problem. 6 years ago I blogged when I fell victim to Blue Badge theft for the first time. A year later I got a phone call from the police telling me that the badge had been found during a routine 'stop and search'. This was around about when I fell victim to Blue Badge theft for the second time. My car was broken into a third time later that year, but this was after my parents had bought me a Blue Badge lock for my birthday so the prospective thieves couldn't actually get the badge. I'd be thrilled if there was a clampdown on fraudulent BB use because if it were harder to get away with using a badge that isn't yours then I'd have to pay my insurance excess a little less often.

Parking can be incredibly difficult. Take my local Sainsbury's as an example. They have 7 Blue Badge bays on the surface and 296 regular bays in their underground car park. The Department for Transport recommends that at least 6% of the spaces for shopping be Blue Badge bays (plus one more BB bay for each disabled employee). Obviously my local supermarket falls far, far short of that 6%. I couldn't use the underground car park if I wanted to because there is no lift down to it. I can only shop in my nearest supermarket if one of the measly 7 bays is empty. And they rarely are. The store has such a half-arsed attitude to patrolling the bays; at any given time there are on average 3 or 4 bays occupied by cars not displaying badges and the remaining 3 or 4 bays are occupied by Blue Badge holders, whether the badge is being used legitimately or fraudulently. Which means that I usually drive into the car park, discover I can't park and take my custom to the Morrison's a little bit further away. I've tried queueing for a bay but this usually results in me being subjected to harassment because being only 31 people assume I can't actually be disabled until they see me in my wheelchair or limping.

If Sainsbury's put in the effort to clamp down on people parking in those pitiful 7 bays either without a Blue Badge or using a Blue Badge that was issued to someone not present then they'd get more custom from local disabled people. I know of other disabled people in Camden who don't bother with the store at all, they just go straight to supermarkets with adequate parking.

All Blue Badges have a photo of its owner on the back. The following are allowed to check Blue Badges to see if the person the badge is issued to is present:

police officers
traffic wardens
local authority parking attendants
civil enforcement officers

If you're asked to show your badge and refuse you can be subjected to a fine. I've been the holder of a badge (blue since 2000, orange before that) for 26 years and I've never, not even once, been asked to present it for inspection to prove that I'm the rightful owner. As I've said before, it's pretty obvious that I'm disabled when I get out of the car and either get in my wheelchair or limp away. But as I've also said already, you can't see my impairment whilst I'm still seated in the car. I recall one occasion when I parked on a single yellow line right in front of a traffic warden. His face lit up and he held his little computer thingum ready to issue a ticket. I put my Blue Badge and clock on the dashboard and he looked disappointed and walked away. He had a perfect opportunity to check that my badge was being used by the person it's issued to, but didn't bother.

The day before BoJo wrote his piece The Sunday Telegraph wrote that around half the Blue Badges currently in use are being used fraudulently. The fab Full Fact investigated but could neither confirm or deny the claim. Based on my own experience of Blue Badge theft the stat isn't surprising at all. After all, at one point there were 3 Blue Badges floating around with my name on; the one in my possession and the 2 that had been stolen from my car.

Johnson twisted the wording in his article to make the 50% stat mean something very different. What he said was:

According to yesterday’s Sunday Telegraph, ministers think that as many as half of all blue badges could be going to people who don’t need them.

It's the use of "going to" rather than "being used by" which utterly changes the meaning. Those two stolen badges of mine were being used fraudulently, but they weren't issued to someone that didn't need one, they were issued to me. This trick of language reiterates my earlier point that BoJo is trying to stir up tensions amongst disabled people to keep us divided.

The government keeps on with this rhetoric about how benefit reform is to "weed out the scroungers" whilst "protecting the most vulnerable". It's utter bull of course, they're planning to cut the DLA bill by 20% despite the fact that only 0.5% of claims are fraudulent. But there are many, many, disabled people who think that they'll be OK because they're genuinely disabled (despite there being a 1 in 5 chance they'll lose their DLA) and they constantly moan about the (almost non-existent) fakers. On Facebook and so on I've seen many people with my own impairment moaning about people that don't look disabled getting benefits because that's the kind of bile this government is encouraging. And with BoJo's ideologically driven article he's pushing that Tory agenda even further in encouraging wheelchair users to be (even more) hateful of ambulant disabled people, while paying almost no attention to the real problem: That of theft and fraudulent use. A problem that could be dramatically reduced if only traffic wardens used their powers to check badges were being rightfully used.

Johnson actually had the gall to say:

We are a warm-hearted species, and we like to confer benefits on as many people as possible,

Oh the irony...

How I spent March 26th

2011-03-29T11:00:00.011+01:00

Based on the TUC's access info I'd planned to meet a bunch of other WtBers in Savoy Street for 11am. This was supposed to be the gathering point for disabled people to have a "safe space" at the front of the march. I have brittle bones and I was with 2 people whose joints dislocate easily so the notion of a "safe" space where we wouldn't get smacked around was pretty important for us to protest, you know, safely.

Apparently no-one hit the TUC with a clue stick. The gathering point in Savoy Street wasn't actually at the front of the march. That would've been much too sensible. They had us gather in Savoy Street and then walk through the crowd to get to the front of the march:

The pink cross on the map shows where we gathered and the turquoise line shows how far we had to walk through a sea of people to get to that "safety". Moving through large crowds as a wheelchair user is not easy at the best of times. You're at arse height to everyone else and people don't tend to look down when they move around so they walk into you, trip over you and generally leave you feeling pretty bruised. Add banners, flags and other things that feel like weapons when people hit you with them and it's even worse.

So that the TUC had us gather some distance away and then walk through the crowd where we got a bit battered was a serious common sense fail. Between the lack of logic and getting smacked around I started off the march really quite pissed off.

This was us gathering in Savoy Street looking cheerful prior to our adventure through the crowd:

This was my view of people's backs as we were making our way through the crowd:

And it's worth noting that I took this photo at a point while walking through the crowd when I had enough room around me to actually do so! I spent a lot of the time using my arms to protect my face from people's backpacks and such.

Eventually we did make it to the "special" spot:

Jack as taken by his wife Emsy

Thankfully once we'd made it through the crowd and the march set off there were no more such access fail dramas. As a result I began to really enjoy myself. The following 3 photos were taken by Emsy during the march:

We made it into Hyde Park at about 1pm (after what seemed like quite a long human traffic jam at Hyde Park Corner). Most of us quickly nipped to the loo and then headed off to Soho Square for the UK Uncut comedy at 2. I didn't want to stick around in Hyde Park for the rally mainly because Mr "I'm in favour of cutting disability benefits" Miliband was speaking. I feared my anger at him would cause me to regress a few evolutionary steps and start flinging faeces.

I've always been disabled, but until about 5 years ago I was perfectly "healthy"; I was free from illness. For many people there's a massive overlap between "illness" and "impairment", but there's also some differences too. So I've always had a rubbish skeleton but before I acquired a plethora of illnesses unrelated to my mobility impairment I used to do that working-for-a-living thing.

I used to be a stand-up comic. Yes, I'm aware of the irony of a wheelchair-using stand-up.

On Friday evening while I was in the supermarket shopping for more T-shirts to iron the WtB logo onto a thought occurred to me: "It's comedy against the cuts. I'm doing all this stuff about the cuts to disability benefits and I have a background in comedy; I should be speaking." So I emailed the organisers and asked if I could do a short set. The reply I got back was "the line up's pretty full, but we'll try and fit you in." But in the end (and with a little help from the lovely Johann) I ended up on the bill.

This photo by Chris Coltrane who compered the gig shows what the crowd looked like from where the acts were (and makes me happy that I ironed the WtB logo onto the back of my T-shirt):

That's Josie Long performing. She opened the show. The crowd had gotten much, much, bigger by the time I went on. This CiF piece estimates there were nearly 1000 people watching the show. I wouldn't have thought there were quite that many, but there were certainly a couple of hundred.

Against all the odds I had a brilliant gig. Look, people were smiling and laughing!

Photo by Noa Bodner

If you look you can even see Mark Thomas laughing along in that pic. I'm actually quite proud of that as he is, basically, the industry standard to which all political comedy gets compared.

I say "against all the odds" because by rights I really should have died on my arse. It's 3 and a half years since I last gigged due to becoming too ill to carry on with the comedy thang. Usually if you take a break from comedy for 3 and a half weeks you come back to find your timing's a little off and your rhythm's a bit out. And I wasn't doing tried and tested material, I was doing stuff that I'd written 12 hours earlier because I only had the idea to ask to go on about 18 hours before I ended up on "stage". I shouldn't have been "in shape" enough to deal with a heckler and turn around a joke that was a bit of a dud. OK, the heckler was very nice and friendly but it's still an interruption to your rhythm and you need to regain control and come out on top with a laugh.

Somehow it was all OK. Sure, it wasn't my best gig ever but given everything going against me it went so much better than I could ever possibly have dreamed of.

In the past I used to mix up jokes about disability issues and other stuff because if I'd only talked about disability I'd never have been able to hold the attention of a non-disabled audience. But given that Saturday was such a political gig and the reason I'd asked to speak was to talk about benefits I did a set solely about cuts to disability benefits. The only reaction I was really expecting was some polite applause when I finished from people thinking "aw, wasn't that nice the disabled woman telling us about benefits." I wasn't expecting such a warm response and to come off stage to have all my friends hug me at once. It was like being mauled by an octopus, but in a nice way.

I've always thought that comedy had a wonderful capacity for education, another reason I really wanted to speak. So I was chuffed to bits when I got home to read this in The Guardian's Live Blog about the day:

I just spoke to two teenagers aged 17 and 19 who have come from the comedy show in Soho Square, and they said that what they heard there made them think more than anything they have ever learnt at school. It's their first demonstration and when I asked why they came they said they realised that the demonstration is about more than just the UK.

They can understand the connection between the shops and the banks that people are targetting and the global situation that is effecting everyone. They've heard Mark Thomas and a disabled comedian and Johann Hari speak. For these teenagers the protest is absolutely opening their minds to a much wider picture.

Noa, who snapped that pic of me in action, said:

you rocked it woman, it was FUNNY and also very disturbing to learn a few of the stories you shared. many thanks and please keep healthy and get back on stage where you belong!

I'm absolutely thrilled that I opened some people's eyes to what's going on for disabled people in the UK. There's a couple of extracts from my set in the Laugh Out London podcast.

I left Soho Square on such an adrenaline high. I'd taken a huge gamble in asking to do a set but it absolutely paid off. I would have skipped home if I could, you know, skip.

Then came the sadness. I love doing stand up so much. It's such an amazing feeling when you've got hundreds of people laughing at jokes you wrote, and Saturday was a reminder of just how thrilling it is. It's so painful that I'm not well enough to perform any more. I have good days and bad, Saturday was obviously a good day. But the sheer frequency of the bad days means that I can't book gigs more than 14 hours in advance because I can never guarantee that I'll be well enough to show up. It doesn't matter if you have a legitimate reason for not showing up to a gig, if you let a promoter down they're not going to book you again and will very possibly bad-mouth you to other promoters. I have this thing that I love doing, and Saturday reminded me that I'm actually reasonably good at it, but my health prevents me from pursuing it. And the government and tabloids really think I'd rather be stuck at home claiming benefits than out following my dreams?

The other element of sadness on Saturday night came from watching BBC News attributing the Black Bloc protesters smashing things up to UK Uncut. UK Uncut are a group of peaceful protesters who'd given me this wonderfully enjoyable afternoon of comedy in a park. And here these lovely people were being falsely accused of violence and vandalism. It was deeply disappointing.

Despite the day starting with access fail and ending in sadness I don't think I'll ever forget that chunk of a few hours in the middle where I had the best time I've had in years.

Cross-posted at Where's the Benefit?

♫...London calling? Yes, I was there too...♫

2011-02-20T16:38:00.003Z

Life, the universe and everything tried to stop me from making it yesterday. From nose bleeds to parking nightmares, I had it all go wrong. I was tempted to just declare "fuck it" and go back to bed (having only managed 3 hours sleep. Not cos I was doing anything fun; I just laid there staring at the ceiling all night). And once I arrived at Congress House I spent most of the day on the verge of a temper tantrum and wishing I had spent the day sleeping.

The first time I heard anyone mention the word "disability" was during the "does the left lead online?" session at 3:30pm. I could've kissed Laurie Penny for bringing up the fact that Labour abolished Incapacity Benefit and talking about the online grassroots disability movement.

This was after I'd spent hours listening to members of other discriminated-against groups tell me that their group was the hardest hit of all.

Now, some of those groups are groups that I also belong to (women, LGBT, working class) so I absolutely understand that they/we are disproportionately hit when you compare us to straight, white, middle class men. But to claim that those groups are the hardest hit group is just not true.

For example; I listened to Dianne Abbott talk about how women and people from a minority ethnic background will be the hardest hit by the cuts. She talked about how people from those groups are more likely to be made redundant because they're more likely to work in the public and voluntary sectors. The same is true of disabled people and for the same reasons; employers in the public and third sectors are slightly less likely to be discriminatory.

But in addition to being likely to lose their jobs due to redundancies in the public sector and funding cuts to the voluntary sector, disabled employees in those sectors are likely to have to quit work due to Access to Work cut backs. Disabled people are also facing cuts to their care packages (which may result in having to give up work due to not having someone to get you out of bed of a morning!) and loss of their DLA.

Abbott also talked about how women and black and minority ethnic folks are more likely to live below the poverty line. This is also true for disabled people. But on top of the current levels of poverty disabled people are facing the prospect of having to pay even more towards their care, losing their incapacity benefit due to the brutal new assessment measures and losing their DLA. People already have to pay more on being disabled than they get back in the form of DLA.

I am not, at all, suggesting that I think that other minorities will not be hit hard. I'm just starting to get annoyed with non-disabled people claiming their group will be hit "hardest" when that is not the case because disabled people experience the same issues but with some extra crap on top.

The complete absence of disability issues from the panels infuriated me too. Why weren't Transport for All represented on the panel talking about transport? Why weren't DPAC, The Broken of Britain or Where's the Benefit represented on the panel about how we're not all in this together? That disabled people are not only being cruelly hit by the cuts but also excluded from discussions about the cuts reminds me of a post I wrote last year about us being the lowest of the low, and something I wrote more recently about how anti-cuts campaigners prefer books and trees to us.

As I said, the session about the left online improved my mood massively. Not only was there an acknowledgement that disabled people exist, I also had a good conversation afterwards with some UKUncutters (apparently my reputation is starting to precede me).

Then there was the final plenary session. I may be utterly furious with the Labour party for not only the recent history in which they scrapped IB and gave us ESA, but also their ongoing support for the coalition cuts to DLA; but I still intend to vote for Livingstone because the improvements he made to the accessibility of London's transport had such a positive impact on my life. However even he managed to piss me off more than somewhat with his closing speech: He talked about how equal London is in term of race, religion and sexual orientation, but how unequal London is in terms of class and wealth. I think it says something about the inequality of disabled people that we didn't even get a namecheck.

I would love to live in a progressive London. Somehow I don't see that happening any time soon when London's so-called progressives turn up to Progressive London denying the existence of around 18% of the population.

P and enforced sterilisation

2011-02-18T16:18:00.000Z

People who've been reading this blog for years (yes, both of you) might remember that the subject of whipping the wombs out of disabled young women is something I've written about before: First there was Ashley X and then Katie Thorpe.

There's been another case in the news this week, that of the woman known only as "P". This case is a bit different to the previous two mentioned: In those the parents basically just wanted to prevent their child from growing up because disabled children are cute while disabled adults are icky. In this case it's about attempting to prevent P from the heartbreak of having children taken into care. So I have a little more sympathy for what P's parents are trying to do, even though I think sterilisation against P's will is wrong.

The issue at heart is one of poor social care. P wants a big family, her parents don't want P to have lots of children only for them to be taken into care but her parents don't have the capacity to support her in raising more than 2 children.

My parents are/were (mum died a couple of years ago) disabled. They had different types of impairments to P; they both have/had physical impairments while P has learning difficulties. But the end result is still the same; they needed assistance to raise a child and run a household.

My parents needed support with physical things like cleaning, lifting heavy saucepans and carrying the shopping in from the car. I'm assuming P needs help with understanding managing domestic tasks, planning recipes and managing a shopping list. At the end of the day both sets of parents require help with housework, cooking and shopping. So why did my parents get a care package from social services but P has to live with her parents to get the support she needs 'Big Society' style? Especially when her parents have a limit on what support they can provide and that's at odds with what P herself wants?

I think it's horrific that we're living in a time when the state would rather spend money on a court case in which the future of a women's uterus is decided and potentially surgery against her will; rather than spending the money on social care to allow that woman to live the life she wants to live and have the family she wants to have.

Hollywood Images of Disability

2011-02-06T22:22:00.001Z

Hat tip to Wheelie Catholic for posting this video.

Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo.

Edit 16/3/11: The video has been deleted from Vimeo. :-(

SPOILER WARNING: Handle with Care by Jodi Picoult

2011-02-02T21:23:00.004Z

The back of the book blurb essentially says that the book is about the parents of a kid with OI who decide to sue their obstetrician for "wrongful birth" in order to pay Willow's medical bills.

After the jump spoilers will abound. So if you haven't read it and don't want to be spoiled, don't read on.

I've been avoiding reading this for years because I knew it'd make me angry. Finally I succumbed to listening to the audiobook.

Quick comment on the audiobook production: It really wouldn't have been hard to research how medical terms like "pamidronate" and "bisphosphonates" are pronounced. The actress who played the voice of Charlotte sounded more like computer generated speech than an actual human being. I realise that some people do have strange elocution, but surely a requisite for a voiceover actress is to not sound like a computer? Now, onto the actual book...

I've seen 2 different versions of cover art for this book. There's the picture on Jodi Picoult's website and the cover for the audiobook. The child in both photos clearly doesn't have type III OI. It reminds me of the case last year of a book about a black character with a picture of a white girl on the cover. I guess the publishers assumed that a picture of a girl with a triangular face, barrel-shaped ribs and bent bones wouldn't sell books.

As with all media representations of OI there are some bad facts. The bad facts start early on in the book while Charlotte is pregnant when they claim that the only types of OI which lead to babies being born with fractures are types II and III. I know loads of type IVs that were born with breaks. The most incredulous bad fact of the lot is after Willow breaks her scapula when the bones in the forearm are referred to as the "tibia and fibula". Really? Does no-one proof-read manuscripts nowadays?

There's a continuity error at one point: Willow breaks a femur one weekend when "all the orthopods in the country are at a conference in Omaha." Couple of minutes later suddenly the orthopods are all in San Diego. And it's not like they're neighbouring towns...

There's another, well, I guess it's a continuity error around rodding Willow's femurs. After Willow breaks her legs at Disney World her parents explain that she can't have her femurs rodded until they've healed. But then later in the book she has her femur rodded to stabilise a break rather than sticking her in a spica for months. As I was listening and they said she couldn't have her femurs rodded until her breaks had healed I thought "eh?" Because I know full well that rodding is used to support breaks and is commonly done while a bone is broken. But I figured Picoult just hadn't researched around rodding that well. Until rodding is used later on in the book. Of course it's perfectly possible that there was some good medical reason why rodding wasn't an option when she broke both femurs but was a viable alternative to a spica later on. But Picoult should've explained that reason to the reader so it doesn't look like a continuity error when one minute they're saying "can't rod when broken" and the next "rodding supports breaks!"

The incident which kick-starts the main story is a series of improbabilities. I realise most fiction relies on unlikely events, but one can only suspend disbelief so far.

The O'Keefes go to Disney World. While there Willow slips over on a napkin and breaks both femurs. Remember Willow is supposed to be a type III: I realise bisphosphonates have massively improved the physical ability levels of people at the more severe end of the OI spectrum, but, really? We're supposed to believe that she was going to walk unaided around the vast expanse that is Disney World?

Willow gets taken to hospital where her doctor doesn't believe she has OI, sees all her old fractures on X-rays and calls social services who call the police.

Parents of children with OI being falsely accused of child abuse is unfortunately not uncommon. But these are usually children at the milder end of the spectrum who don't (literally) have OI written all over their face. Even if the doctor didn't immediately think "OI" upon her arrival, when her mum said "Willow's got OI" the doctor should've just looked the fact that she's five but the size of a toddler, her blue scleras, her triangular face and her barrel-shaped ribs and gone "oh, yes. So she has."

The social worker asks Willow's older sister Amelia "does anyone ever hit Willow?"

Amelia remembering the time another kid hit Willow in the playground and broke something answers "yes."

The social worker isn't interested in hearing any further explanation and whisks Amelia into foster care and tells the police to take the parents away.

Now I've done more than my fair share of training in child protection. You do not ask leading questions because if you put words into a young person's mouth at that stage the case could be thrown out of court. You allow a young person to explain in their own words. No-one wants to let actual child abusers get away with it.

Willow's parents Sean and Charlotte get arrested. Sean is a police officer in New Hampshire and knows protocol. He knew that the police should've interviewed any of the many witnesses that could verify that Willow slipped over on a napkin and that no-one hit her.

Sometimes shit happens. It is possible to come up against a doctor so negligent they can't recognise OI that obvious. It is possible to come up against a social worker who's trying to trick kids into making a false declaration of abuse because she's not met her annual targets for numbers of kids taken into care. It is possible to come up against cops who just want to lock people up for the fun of it without bothering to check if a crime has actually been committed. It's even possible to come across all three of those people in the same day. Improbable but certainly not impossible. Not even as improbable as Willow being able to walk unaided around Disney World.

Upon returning to Bankton NH Sean drags the family to see a lawyer wanting to sue over the series of failures they encountered whilst away. The lawyer tells them "you have no case. They were only doing their job and trying to protect a child. You wouldn't want them to do anything else."

Erm... the negligent doctor? The social worker who resorted to trickery? The cops not following procedure? Personally I'd have gone and found a better lawyer.

The lawyer says they have no case there but looks at Willow and immediately assumes her birth was wrongful. So asks a few questions about Charlotte's ultrasounds during her pregnancy and decides "yes, you do have a case. Just not the one you were thinking of."

So after some umming and ahing Charlotte and Sean realise that winning this legal case would mean that never again would they need to fight with the medical insurers over an operation Willow needs. Willow would be able to get a new wheelchair when she needs one, not once the minimum 5 years decided by her medical insurers has passed. The family would be able to afford a new wheelchair accessible vehicle. Willow would be able to afford any adaptive equipment or assistants she needs to go to university and live independently.

The downsides are that Charlotte has to sue her obstetrician best friend, they have to stand up in court and swear under oath that they wished Willow had never been born and the family has to survive near self-destruction. First Sean and then Amelia jump ship and testify as witnesses for the defence in an effort to make sure at least someone's said out loud that they're glad Willow was born, for Willow's sake when she reads about it in the papers.

In the pre-book blurb (e.g. Picoult's website, etc) it's implied that Charlotte was lying under oath when she swore she wished Willow had never been born. But as the book goes on it starts to paint a picture that, actually, if she'd been told about Willow's OI at the 18 week ultrasound stage; she'd have had a termination. "I wish my child had never been born because she's got crappy bones," is a very different story to "I'm glad I've got my wonderful daughter, but I'm going to stand up in court and say that I wish she'd never been born in order to cover her medical bills."

Blah, blah, blah; the O'Keefe's win their case and get $8 million in compensation. They never actually cash the cheque as a plot device to try and salvage some reader sympathy for Charlotte.

Long before I read the book I knew that Willow died at the end. Throughout the whole book they kept banging on about people with OI having shortened lifespans and what would happen "if" Willow made it to adulthood. Yes, some people with OI do die of OI-related conditions such as chest infections (because we have tiny lungs) or a fatal stroke in people with basilar invagination. But they tend to be people at the more severe end of the OI spectrum. And remember it was set early on that Willow was able enough to walk around Disney World. People with OI die of all sorts of "normal" things; cancer, heart failure (like my mum), etc. So I was actually incredibly relieved when I got to the end of the book and discovered that Willow died falling through thin ice on a frozen pond.

Instead of cashing the compensation cheque Charlotte slips it into Willow's coffin so it's buried with her. As I said before, clearly a device to try and make the reader like Charlotte again. Thing is, it didn't make me like her. It made me scream "you idiot!" The O'Keefes went through hell to get that money so they're well aware that other families with a member with OI have the same expenses. If she'd cashed the cheque and donated the $8 mil to the OIF the money could've been used to buy wheelchairs and other bits of kit for people with OI who were struggling financially. Other OIers need that money more than the malpractice insurance firm. So Picoult's attempt at making me like Charlotte failed completely.

I was incredibly surprised by the characterisation of Willow; by which I mean that I was incredibly surprised by how much Willow was like me at that age. She has a remarkable memory for everything and a reading age far, far, advanced of her chronological age. Just like her I read anything I could get my hands on when I was little:

I still sit like that - with my leg sticking out - to support Berliner/broadsheet newspapers when I read them.

In fact I spent so much time waiting for X-rays at my local hospital that I could spell "danger" and "radiation" from reading the signs on the door at about the same age as my peers were learning to spell "cat" and "dog". I have to admit I envy the internet access she had, I wish it had been around when I was little and stuck at home with limbs in plaster. Because I know I would've been just like her and ended up setting up Gmail accounts for the family pets out of boredom. In fact, I am just a 31 year old version of her: My cat tweets with a little help from me.

Not all the characters are perfect. Amelia dates a teenager with OI she meets at an OIF conference. At first she lies and tells him she's a type 1. When she admits she doesn't have OI his response is "I'm glad. If you care about someone you want them to be healthy." Hello? You'd rather date a non-disabled person who lies to you than a cripple? But then I suppose some people are that self-loathing, especially young people who haven't been exposed to strong disabled role models.

Ultimately the book left me feeling glad to be British: We have an NHS so us British folk with OI don't need to worry about medical bills (for now, at least). The NHS has a wheelchair service so kids like Willow aren't at the age of 6 still having to use the wheelchair they were prescribed when they were 2 and half the size they are now. We have Disability Living Allowance (DLA) to cover some of the extra costs of being disabled (also, for now at least). We have the Motability scheme which allows you to forfeit the mobility component of your DLA in exchange for a car. We have Disabled Students' Allowances to cover the extra costs disabled students face when going to university. We have Direct Payments to allow disabled people to pay for the assistance they require (though the future looks bleak for some 21,000 care users). We have Access to Work to cover the equipment and assistance disabled people need in the workplace (though it's being cut back too). All these things we have in the UK are what the family in the book needed and didn't have so they brought the court case to cover those costs. That it left me with such a strong feeling of being glad to live where I do (until the ConDems fuck it up, of course) means that the storytelling was effective.

Why I'm not surprised that no-one helped Simone Back

2011-01-06T22:18:00.003Z

You've probably read about Simone Back by now. It seems there's a global wondering of how people could possibly ignore a suicide note. The world seems stunned that no-one helped her as she lay dying after so publicly declaring that she'd ODed.

I think it's so desperately sad that no-one came to her aid, but I can't even feign a bit of surprise that people bitched about her rather than saving her because I know what it's like to be unwell and for people to become desensitised to you mentioning it. For the most part my own health problems are physical rather than mental but I think the principal is the same across all illnesses of whatever type.

When Simone posted the words "Took all my pills be dead soon bye bye everyone," one of her "friends" replied with:

"She ODs all the time and she lies."

Now I don't know Simone, I've never met her. I only know what I've read in a few news articles. But that cold, unfeeling sentence from one of her "friends" would suggest that Simone has attempted suicide in the past and was quite open about it.

When you talk about your ill health all the time, be it mental or physical, people seem to stop giving a shit after a while. Like you're a broken record and the disjointed tune will remain the same no matter what intervention so people just ignore that track and wait for the next one. Except in the online worlds of Twitter and Facebook it's not like you've got to wait for the dodgy track to play out to get to the next song like you did with vinyl or tapes: Twitter and Facebook are more akin to mp3 players and you can just scroll past the corrupt song onto the next one.

So when I mention feeling unwell my online friends don't respond with concern anymore, they just scroll past onto the next update; me mentioning my shitty health is the TwitBookSpace equivalent of that corrupt file in your iTunes library.

I've been having a bad day today. Earlier in the week I had a reminder of what my life used to be like when I had that precious thing called health. While I had a fun evening out on Tuesday it has since got me contemplating all the things I've lost and the things I had the potential to be which are now dreams that'll never be realised. That contemplation made me cry. My body is constantly on the lookout for any excuse to hurt and via a couple of degrees of separation the emotional upset ended up causing me physical pain.

My tweets are set up to automatically update my Facebook status. So this morning when I tweeted that I was having a bad day that fact was broadcast to my 407 Twitter followers and 376 Facebook friends. The number of people that replied? 3. Two Facebook friends I know IRL and one Twitter follower who's only just started following me so is therefore presumably not sick to the back teeth of me moaning yet.

A couple of hours, one nap and many drugs later I tweeted that I'd managed to cry myself into physical pain. This time it warranted even less of a response: Just the one person who I only met last month said that she was sorry to hear I was having a sucky time. Again, I'm sure that once she's known me for more than three weeks she too will lose interest in me feeling rough.

I think stereotypical British stoicism is part of the problem. We're not supposed to talk about negative feelings, whether they be physical or mental. On Tuesday I had a brief conversation with someone I haven't seen for over 5 years: Since before I became "ill" (I've always had a shitty skeleton but there's a difference between "illness" and "impairment". Until 5.5 years ago I was mobility impaired but free from illness). She's doesn't know anything about me other than that I have a very loud laugh, but in the polite and conversational way that you do she asked on Tuesday "how have you been?"

I actually had to pause for a minute. "Do I answer honestly or do I just say what you're supposed to say which is 'fine'? She doesn't know me so doesn't need to hear my shit. But on the other hand I hate lying..." I opted for just shrugging because I couldn't bear to deviate from the social norm enough to say "not at all well actually." Except I did then explain that I'd been ill because I suck at keeping my trap shut.

With social rules dictating that we're not even supposed to answer "how are you?" honestly unless the answer is positive it's not entirely surprising that there is such a backlash against people like Simone who'll publicly state "I hurt" rather than keeping their British stiff upper lip.

I'm not going to pretend that I'm above the social rules and desensitisation. I have Twitter and Facebook friends with painful diagnoses and I don't reply every time they say "sneezed and broke a rib" or "dislocated my shoulder relocating my knee." I've rolled my eyes at friends who always cry when they're drunk because with inhibitions lowered the stiff upper lip falters and their sadness slips out. I'm not proud of it, but sometimes you don't want to listen to that dodgy mp3 and you want to listen to a new song you've never heard before. Or at least you want to listen to a song that'll play without scritching.

Then there are those who will criticise you for being open about how you're feeling. Those who'll attack you for complaining about feeling crappy. You wouldn't believe the number of times as a child I was told to shut the fuck up screaming about my broken bones because my distress would upset other people. The TwitBookSpace equivalent I guess would be unfriending/blocking someone for being honest about how they feel, giving a bitchy remark as a parting shot. Or deleting that corrupt file from your iTunes library.

When it comes to mental health we, as a culture, want to hear about it even less than physical health. If people are going to ignore me moaning about being in physical pain you can be sure they'll steer well clear of someone moaning about being in emotional pain. And if people can react with hostility to a cute small child screaming because they've got 3 freshly broken long bones and no painkillers in their system is it really surprising that people are hostile to someone saying "I'm killing myself"?

When it comes to talk of suicide we typically have 2 responses:

Disbelief
A desire to not get involved in case we make matters worse

On disbelief: In both those Telegraph articles they quote "a spokeswoman" from Mind as saying

It is a myth that people who talk about suicide don't go through with it.

I find it greatly alarming that we get a lot of anonymous commenters on WtB talking about how they plan to kill themselves if/when they lose their benefits. Sadly we have heard from people who don't believe those people actually are planning to kill themselves because of the myth that genuinely suicidal people don't talk about it.

As for point 2, I have an example in mind. Just before Christmas the wonderful Incurable Hippie read this article and started begging people in the Oxford area via social networks to go down to Wolvercote lock and take Mr Payne warm clothes and food and a puncture repair kit because being in Sheffield she wasn't in a position to physically help him herself.

Someone she asked refused to retweet the link because Mr Payne was suicidal and he felt that Mr Payne's aid should only come from The Professionals. I'm pretty sure that a thermos full of Heinz soup reheated by an amateur would've been satisfactory and that Payne didn't really need any food to be prepared by Jamie Oliver.

Yes, I do realise that the gentleman in question wasn't referring to pro chefs. But are we really that afraid of mental illness that taking hot soup to a cold depressed person is too scary? But taking soup to a cold person who's full of joie de vivre would be OK? Isn't it conceivable that if Mr Payne was treated like a human being instead of a social problem that he might not actually have been feeling suicidal in the first place?

We have a cultural thing about not talking about how we feel unless our feelings are all rainbows and sweeties. We ignore people who break that rule or are sometimes even hostile towards the social deviators. As a culture we have a big problem with people who'll speak out about feeling suicidal. Yet people are somehow still surprised that no-one rushed to Back's aid? Saddened, of course. But surprised? Really?

Edit: Just wanted to clarify that I don't think it's an internet problem; people have the same reaction in real life towards people who talk about illness regularly. I think it's more that ill people are supposed to be stoic about their pain and so those who do talk about it are castigated. If anything I think the problem is worse in real life: In my experience people actively avoid those who moan about their health all the time. Online people tend to just avoid the health-related updates rather than avoiding the ill person completely.

I also wanted to touch on the fact that every article I've read about Back quotes Graham Bell from the Brighton and Hove Depression Alliance as saying:

“People need to be friends in the real world as well as in the online world.”

Really? Funny thing about illness is it makes you ill. When you're in too much pain to get out of bed, or when you're too depressed to get out of bed, or when you're too stoned on medication to get out of bed how the hell is one supposed to get out there and maintain real-life friendships? I frequently go weeks and weeks without talking to friends in person. If it weren't for my online social life I'd have no way of keeping in touch with people at all. In person friendships are great for those with the health to manage them but who am I going to forge RL friendships with from the confines of my flat?

Thoughts on the student protests, policing and the media

2010-11-25T19:11:00.001Z

I'm so proud of British students right now. I'm especially proud of Britain's schoolchildren and sixth formers who protested yesterday. I was especially pleased when BBC News reported on sixth formers from Cambridge protesting, though I felt a slight pang of jealousy: When I was an oppressed¹ and politically aware sixth former in Cambridge I'd have loved nothing more than to march through the streets to protect my future.

Of course, the media portrayal has mostly been of the tiny number of students who committed acts of damage to property, especially that police van. What most of the mainstream media isn't reporting (in fact I think only The Guardian has) is the number of protesters who tried to protect the van. In this video you can see some of them, and there's this iconic image from The Guardian:

At one point the BBC reporter in the Commons explained why politicians and the media are so keen to report on the poorly behaved few rather than the well behaved majority. He was reporting to the camera what a politician had told him (but I'm afraid I didn't catch who, the trouble with live TV). I'm paraphrasing him, but not much (and only because I didn't get to write/type down his exact words):

If the protests get violent the public will lose sympathy with the protesters and support our plans for higher fees.

On one hand on our TV screens we're seeing looped footage of a few protesters smashing up an unoccupied police van (which some speculate was put there as bait) in the hope that it'll make the majority think "hmm, fees are good! Let's teach these brutal young things a lesson!" On the other hand what we're not seeing is the brutality from the other side.

Thanks to camera phones and the internet incidents of police brutality are harder to hide. And yesterday saw some unforgivable behaviour. Throughout the day there were many tweets being rapidly retweeted with content along the lines of "Officer abc123 kicked a 15 year old girl."

Some actual examples:

Why is the right-wing media barely reporting on that? Oh, yes; wouldn't want to garner support for the protesters, would we? Cruelty to children is far less important.

¹ The Disability Discrimination Act was written while I was in my first year of sixth form. However it didn't come into effect until years later.

Where's the Benefit?

2010-08-13T17:57:00.002+01:00

A bunch of us made a new blog all about the War on Welfare Claimants called Where's the Benefit?. Go on, have a look.

The lowest of the low

2010-07-24T18:51:00.003+01:00

Being female, gay and disabled¹ you'd think I'd experience 3 times as much discrimination as a disabled but otherwise socially privileged bloke, right?

Wrong. All the discrimination I ever experience is disablism.

Not only is experiencing daily disablist acts (like not being able to get into a brand new café) frustrating, there's also the constant reminders that discrimination against disabled people provokes the least outrage among society at large out of all the isms.

Easter weekend 2009 there was the amazonfail brouhaha. It doesn't matter if someone from amazon.fr pressed the wrong button which "accidentally" meant rankings were stripped from any books to do with homosexuality or sex and disability. Where the conscious and deliberate disablism occurred was in the web/media frenzy. Everyone on the planet cried "homophobia" in their tweets, blog posts and news articles. Only a tiny, tiny smattering of people gave a crap that books on disability and sexuality had been affected too.

A couple of months ago the LGBT Labour party conference were refused drinks in a London pub. The story of homophobic discrimination spread across the internet like wildfire and was global news within a couple of hours. My gut reaction upon reading the story was to tweet Greencoat Boy: The gay in me is horrified. The disabled in me says "so what? Disabled people get refused service DAILY and it's not news.".

Two hours later my point got illustrated perfectly. I read this story of a wheelchair-using woman being refused service in a restaurant on the very same day. Naturally I tweeted the link. The story of a homophobic bar manager was tweeted and retweeted thousands and thousands of times. How many people retweeted the tale of a disablist restaurant manager? Two. Not two thousand; just two.

Yesterday it was news that a niqab-wearing young Muslim woman and her friend were refused entry onto a bus for "being a threat". I'm refused entry to roughly one in 5 of the buses I try to board because I'm a wheelchair user. Very often the driver doesn't even have the balls to tell me he's going to refuse me access, he just pulls up at the stop, doesn't get the ramp out, allows able-bodied² passengers to board and then drives off.

Where's my news story in the top 10 on the BBC News website? Where's my "urgent investigation" into the discrimination I faced?

Superaleja once referred to "multiple layers of discrimination, like a crip-fail onion," which I think perfectly describes the 3 situations I've written about here. First disabled people get discriminated against, then there's the second layer of discrimination where we're denied the public outcry of horror that would be extended to the same discrimination being committed against any other minority group.

¹ I have been told on many an occasion that it's a shame I'm not black too. During my stand up days (before I became too ill to carry on) I had an 'anti-fan' in Brighton who came to see me every time I gigged in the city to accuse me of being racist for telling the story of how daft people sometimes say "it's a shame you're not black." Being so hated really made me feel like I was doing the job properly.
² I'm deliberately using the phrase "able-bodied" as the opposite of "physically impaired". There's a chance that some of the people boarding the bus are both disabled and able-bodied.

Lie to Me

2010-07-22T16:46:00.002+01:00

Lie to Me is my new favourite show. Well, I say "new", it's actually been just over a year since I sat and watched the whole first season in the space of 2 days because once I'd started watching I couldn't stop (like televisual Pringles). But calling it my "new favourite show" is my way of trying to explain that it's beaten CSI to the number one spot in my heart.

It seems to have slightly hit that difficult second album thing that musicians know too well with season 2. Season 1 was this wonderfully original show that looked at truth and lies in a way that had never been seen before on TV. Season 2 so far has just been all about the adrenalin: More episodes have had at least one of the main characters in mortal danger than not so it's no longer the original and unique series it was, because holding a major character at gunpoint is something you see pretty much daily on American TV (though I have a funny feeling the network demanded more danger in the hopes that the adrenalin would make it more popular). It's still damn good though, but if I was a teacher marking season 2 I'd write "could do better" in red ink on it.

Over the course of nearly 2 seasons Cal and the team have met quite a few disabled people: A guy with MS in 'Life Is Priceless' (though the ep was poorly researched and contained bad info about the mortality of folks with MS), several women who'd been blinded by a rapist in 'Blinded', a woman with multiple personalities in 'The Core of It', a paraplegic in 'Black Friday', and a veteran with PTSD in 'React to Contact'. In all of those episodes disability was used as a plot device and it hadn't been explored how disabled people could be harder for Cal to read, until last week.

In 'Teacher and Pupils' Cal is asked to help a police officer who has been shot and is now locked-in to identify his shooters.

I've had this little fantasy for a while where Cal is asked to investigate a crime in a segregated environment - probably a special school - and is faced with a difficulty in reading impaired faces/bodies: The face and arms that move constantly because that person has CP would be a barrier for Cal, the person with autism who never makes eye-contact whether they're lying or not, the person who seems constantly distracted because they have ADHD and not because they're in a hurry to get away because they're trying to hide something, not being able to follow the gaze of someone with nystagmus, and so on. Cal has often commented that he likes a challenge and investigating people with bodies and brains that work slightly differently to the ones he's used to reading would surely be a thrill.

And, of course, I'd ultimately want the episode to be an antidote to the CSI episode 'Sounds of Silence' which had a strong subtext of "segregation is good. If only he'd stayed in the safety of segregation and not gone out among those non-disableds he would never have been killed."

Benefits part 1: How I benefit

2010-07-06T13:51:00.003+01:00

It's taken me a while to even start writing these posts because at the moment I'm even less functional than usual. Overheating is one of the less pleasant symptoms of OI, and in case you hadn't noticed it's been rather warm lately. And then there's the fact that I've had a cold on top of my chronic sinus problems for more than 3 weeks which has had me whimpering a lot in between doses of painkillers. Basically all I've been fit for is laying on the sofa watching NCIS.

Edit: Another week has passed since I first sat and started writing this post before I found the spoons to come back and have another crack at finishing it.

I suppose I should start off by explaining exactly why I get the benefits I do. I'm generally of the opinion that my medical history is my business, not yours. Which is a bit odd because I'm a fairly open person. I think it's a reaction to the fact that because I'm disabled my medical history is supposed to be out there for public consumption. I'm also definitely of the opinion that my income is my business. But I've been called a "scrounger" by our politicians so many times that I've been ground down.

So here's my history:

I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component. I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street before my knees had swollen up so much that I couldn't bend them for the rest of the day.

I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking¹, sleeping² and eating³. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.

I've had osteogenesis since I was born (well, actually, since I was conceived) but until about 5 years ago I was perfectly healthy. There's a difference between illness and impairment. For many people they overlap but for many more there's a great deal of difference. So up until the age of about 26 I had a physical impairment, but I was a picture of health. At one point I didn't even notice that my GP had deregistered me because they hadn't seen or heard from me in so long. Being a healthy young person I earned for a significant chunk of my degree despite typical student work like bartending being not accessible to me. When I graduated I took on 2 part time jobs rather than a full time position. In addition I got paid for writing articles, doing media stuff for the now defunct Disability Rights Commission, and eventually I progressed far enough through the stand up circuit to get paid for making people laugh.

Then I got sick. I've always had slightly dodgy sinuses but starting in 2004 they got progressively worse. I can remember the day things started going downhill actually: I was in Edinburgh and it was the day I went to see Laurence's show. I've always taken co-dydramol for my bone and joint pain. But that day in Edinburgh was the first time in my life I'd had a headache that co-dydramol couldn't touch. I might as well have swallowed 2 M&Ms. These sinus pressure headaches became more severe and more frequent until I became unable to work in 2006 because spending roughly 2 days a fortnight in bed in agony doesn't please an employer.

How painful can a blocked nose be? Well, having grown up breaking my bones regularly I have a much higher psychological tolerance to pain than the average person. I recently had a nurse in a laser clinic describe me as "remarkable" because she was burning me with a laser and I didn't even blink. 2 years ago I broke my nose and didn't notice for 3 weeks because the pain was so minimal compared to what I'm used to in that region. It was only when I reached 3 weeks I thought "hmm. If it was anything other than broken it'd be healed by now." I've never, ever, taken anything stronger than 10/500 co-dydramol for a broken bone (or 3) but nothing less than morphine provides any relief at all for my sinuses. Morphine may relieve my pain but it comes with a side-effect of making me "drunk": it reduces my inhibitions and gives me verbal diarrhoea. So for around 2 days every 2 weeks I have the choice of being either in too much pain to work or too stoned to work. Someone who needs 2 out of every 10 working days off is not employable. 2 days every 2 weeks is an average during a "good" period. If I catch a cold they can last for months because related to my sinus problems I also have a rather buggered immune system. And my sinus pain can be bad for every one of those days for the whole 2 months it takes me to shake the cold.

"Why don't you work part time?" Because employers expect to know when you're coming in to work. Even if they list 'flexi-time' as an option they still expect you to be present at certain times and they like to know in advance when you'll be coming in. I can't predict in advance which days I'm going to be ill.

"Why don't you work from home?" I doesn't matter where I'm located. On days when I'm too ill to work, I'm too ill to work.

"Why don't you write?" When I had a contract as a columnist I'd get a phone call on the Tuesday asking me to submit an article on Friday. If I was ill on the Wednesday and the Thursday I'd have either nothing to hand in on Friday or I'd hand in something written under the influence of morphine. Either way, my contract would not get renewed. And it's taken me 8 days to write this piddling little blog post.

If I were otherwise unimpaired and just had my sinus problems I could probably manage a physical job that require little brainpower on ill days by taking so much morphine I couldn't feel a thing. I'd make absolutely no sense so would be unable to do a "thinking job", but I could manage a repetitive task job like unloading loaves of bread from a trolley and placing them on a supermarket shelf. But I'm not otherwise unimpaired, I have a knackered skeleton and "thinking jobs" are the only kind I can physically do.

I've really explored all the options and working is just not possible. So I get Incapacity Benefit. This is topped up with a very tiny amount of Income Support to make up the total a severely disabled person living alone is deemed by the government as needing to live on. I also get Housing Benefit to keep the roof over my head.

Part 2 coming soon. Unless this sore throat and bunged up ear turns into another cold...

¹ December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
² In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
³ As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).

My Email to the Lib Dems on a coalition with the Tories

2010-05-08T13:39:00.005+01:00

I’m not usually a Lib Dem voter, my opinion tends to sway between Lib Dem, Labour and Green.

But I voted for you this week. Why? Because I’m terrified of a Tory government.

Terrified as a disabled person. Terrified they’ll take my benefits and leave me starving.

Terrified as a child of an even more disabled person. Terrified that despite my own impairment and health problems that I’ll have to give up what little life I have and become my dad’s carer when the Tories take his care hours away, expecting people to “volunteer”.

Terrified as a lesbian. The election campaign has been full of stories of Tory homophobia. Just google “Philippa Stroud”.

Terrified as a person with oodles of health problems. I depend on the NHS to live. Please don’t support Cameron in taking it apart.

And I voted for you for electoral reform. According to http://www.voterpower.org.uk/holborn-st-pancras my vote is only worth 10% of a vote. I want my vote to count.

Please read Johann Hari’s article on what Britain under the Tories would look like for someone like me: http://www.independent.co.uk/news/uk/politics/poverty-and-injustice-in-david-cameronrsquos-model-borough-1962318.html

Please don’t get drunk on the power of the possibility of a seat in cabinet with the Tories. Please work with Labour, Green et al.

If you do work with the Tories I will never be able to vote Lib Dem again.

*****************************

Footnote pinched from Lilwatchergirl: If you agree, and want to share your views with party HQ, e-mail balancedparliament@libdemvoice.org . They've asked for views before 2pm today, but I'm sure they'd find views useful at any time this weekend.

BADD 10: Discrimination by ignorance and the myth of the DDA

2010-05-02T17:19:00.002+01:00

"But I thought everywhere was accessible now."

How I loathe that sentence. It usually follows my asking "so why did you hire somewhere inaccessible for your event? Because now I can't come."

For example, I've just spent the last 3 days at a film festival/conference tied to my course (and is why my BADD post is a day late). I arrived on Thursday, picked up my ticket and was told by cinema staff "it's in screen 2, which is not accessible."

Joy.

And, of course, the "but I thought..." line swiftly followed from the director of the event who'd hired the venue.

At the end of last year I joined a masters swimming team in my vague attempt to be slightly fitter/healthier. Recently the pool has had some lane closures due to building work and a member of the committee wanted to move the session I usually go to to a different pool until the building work had ended.

"Can you please not, cos, you know, I don't wanna be excluded and I hear the other pool is not accessible."

"But I thought..."

Lots of people started boo-hooing when The Astoria got demolished. Me? I was thrilled because never again will I miss seeing a band because they had their one London date in that inaccessible venue. When I told people why I was so pleased it had been demolished (and demolished to make way for an accessible train/tube station no less!) I frequently heard "But I thought..." I'm sure even most bands playing there didn't realise all the fans that were being excluded because of "but I thought..."

(I'm sure Jim Davidson would've loved playing there though.)

I'm a big fan of the DDA. Yeah, sure, it's got so many holes it's kinda like a sieve. But it wasn't around for the first half of my life and in the last 15 years since it was written I've noticed that the world has become much more accessible and less cruel.

But it does have its sieve-like qualities which means that the world isn't as accessible as it should be. There's not really any excuse for a major west end cinema that's part of a huge national chain to not have full access. But the holey law means they get away with it.

Then the myth that DDA works makes the problem worse. People book venues in good faith assuming they're accessible. The venues then think "we don't need to improve access because the money's still rolling in." And I'm the one that loses out.

I don't know how we go about pointing out to the world en masse that they're mythtaken (thanks Buffy!): The world is not accessible so when booking a venue you need to check access. But that's one I'll have to tackle another day. Now I'm going to put heat pads on my painy ankle and shoulder from hauling myself up a flight of stairs repeatedly for the last 3 days.

Sport Relief and child carers

2010-03-23T14:33:00.002Z

As I type there's a builder putting my kitchen back together in a slightly more accessible way after demolishing it last week. My home is in utter chaos. All the contents of my kitchen have been piled up in my living room so I can't get in there. My whole flat is filled with demolition dust. It's all pretty grim. (If you're at all interested you can see the photos here. So far I've managed a photo a day.)

I'm spending my days sat in my bedroom with my laptop atop my lap mostly watching TV shows on it. With all the dust and the complete lack of kitchen I'm staying at Lilwatchergirl & her Girl's during the week and then staying at my dad's at the weekends. The BettyCat is staying at dad's while the builders are here so she doesn't end up like the cat in A Bucket of Blood so the weekends are my chance for some Betty snuggles.

It's a well known fact that I'm a telly addict, or I like to think of myself as a 'professional telly watcher': My MA is in Cult Film & TV so watching TV is currently my occupation. And yes, I really am still doing a supposedly one year course that I started in 2007; chronic illness, surgery, mum dying, injury leading me to spend 8 months on painkillers that make me sleep all the time, 2 months of swine flu because my immune system is buggered, dad in hospital and still several chronic illnesses have made the course last somewhat longer than intended. Thankfully Brunel have been great about how utterly shit my life is.

Despite being a massive consumer of TV I generally only watch scripted drama TV, I almost never watch chat shows, game shows, the news (which I prefer to access online), panel shows or general daytime tripe. And I also almost never watch TV as it's broadcast, preferring to make use of services like iPlayer.

I'm not living in my own home at the moment though because it's a building site. Staying with other people I'm finding myself watching things I wouldn't usually watch. When someone's good enough to let you sleep at theirs you can't really grab the remote and turn off their favourite show. So on Friday night I found myself watching Sport Relief, which I almost certainly wouldn't have watched if I could get anywhere near my own TV. It was pretty funny. Smithy's sketch, the Olympian and Paralympian Choir and the Ashes to Ashes sketch were the highlights for me.

Some of the appeals were heartwarming. Chris Moyles crying because he'd just seen a baby die from malaria prompted such generosity that they repeated that appeal again an hour later.

But a couple of the appeal videos made me want to smash dad's tellybox in frustration: The videos of children who care for disabled parents. Obviously I wasn't annoyed with the children themselves; their lives suck. They've been forced into a terrible situation and absolutely deserve to be helped.

What made me feel sick was that in a supposedly first world country in the 21st century child slavery is still legal. There's no need for it to be, and it's not something that can be fixed by Sport Relief providing these children with a befriender for 2 hours a week.

If those disabled parents had all their support needs met then the children would be free to be children and would be able to have the carefree childhood they should have. It's a simple fix.

It all starts with a faulty assumption that if a disabled person has a child, or a person has a child then becomes disabled that that child will automatically care for their parent. Laurence Clark once wrote a brilliant article about this assumption. I'm a child of not just one but two disabled parents and I never once had to perform any care roles for my parents. (Yeah, OK, I was more severely impaired than the 2 of them put together up until I started secondary school, but we'll just gloss over that.)

My parents had a care package meaning that I never had to worry if mum would need help getting things down from a high cupboard or carrying the shopping home. When they both had separate accidents in 1994 resulting in a reduction in mobility for both of them that package was increased dramatically. By this point I would've been able to perform a lot of "care" tasks; no longer breaking my bones with such regularity I'd learned to walk a little and was able to push a manual wheelchair infinitely. I could've done the shopping and the cooking and picked up things one of them had dropped on the floor, but I never had to, they had assistance to do the things they couldn't allowing me to be a teenager.

All children in the UK should be free from slavery. All disabled people should get their assistance needs met. If all disabled people got their needs met there would be no need for any child to enter into this one form of legal slavery.

Right now we are in an amazing position to change the lives of young carers. We have a general election coming up. A £5 donation to Sport Relief might give a young carer an hour with a befriender to go bowling but demanding that the politicians gaining power in 2 months time meet the assistance needs of their disabled parents can give those same children back their childhoods.

So please take this opportunity to lobby the candidates in your area about this issue. You have the power to make a real change for these children and their parents. Change that no Sport Relief project can bring. With disabled people being enabled and their children allowed to be children your £5 can then go to buying mosquito nets to save the lives of babies like this one in a country where we Brits don't have the power to effect political change.

Hate

2010-03-12T18:06:00.008Z

On the International Day of Disabled People I mentioned that the EHRC had used the day to launch an inquiry into disablist harassment in the wake of the Pilkington murder/suicide.

Something occurred to me a couple of days after posting: Plenty of disabled people have been killed in hate crimes - people like Brent Martin who was killed over a bet - but they hadn't really entered the consciousness of non-disabled people. What made the "Pilkington case a Lawrence moment for disability hate crime"? Eventually it hit me: Fiona Pilkington was not disabled. She committed murder/suicide out of frustration at the disablist harassment of her two disabled children. For the first time disablist hate crime was responsible for the death of a non-disabled person. And I think that's why the public suddenly gave a shit. If disablist hate crime was still only killing us mere disableds, no-one would care.

Fortunately disablist hate is now getting the attention of both non-disabled people and at least one disabled person who had previously thought that disablist hate crimes were fiction.

This week we've had the sad news of the death of Mancunian David Askew. Unusually for this kind of story it has been news. For a while yesterday (Thursday) the BBC story about his death topped the list of "most read" stories on the site. Many publications note that he was 'tormented to death' yet I've not seen one article remark that the harassment was probably fuelled by disablist hate.

Also this week we've had the rather ridiculous Ofcom decision that TV stations should broadcast the word "retard" because to not do so would be a breach of viewers' human rights. In other words, encouraging disablist hate crimes is good. Mencap have launched an Email campaign against Ofcom's ruling

Today the Independent ran a column filled with offensive language, praising Ofcom's decision, and slamming 'political correctness'. Yes, the same paper that also today declared David Askew's death a "tragedy" and asked "Could nothing have been done to protect him?" The Independent's right hand wants the right to call disabled people offensive names while the left hand wants to protect people like David Askew. Apparently the editor is completely oblivious to the fact that Askew was no doubt repeatedly called a "retard" during his decade of harassment.

The Pilkington case might have brought the public's awareness of disablist hate some way forward but with Ofcom and the Independent declaring that disablist hate speech is not only acceptable but a good thing we've still got a long way to go.

Edit: For those of you who think that not wanting to be subjected to hate speech is "political correctness gone mad;" Here's Johnny Knoxville (really not known for his PCness) and his friend and colleague Eddie Barbanell on why the word "retard" is not acceptable:

Edit 22nd March: Today there are finally a couple of news stories containing both "David Askew" and "disability hate crime" on bbc.co.uk and in The Independent.

Gadgets

2010-03-01T19:35:00.005Z

Just for a change, I am ill. I was going to do all sorts of constructive things today, but between pain and painkillers I have the attention span of a gnat (hat tip to Sheldon for the gnat quote). So I'm going to rant. Because that comes naturally and requires little concentration. As you've probably already gathered if this isn't the first post here you've read.

iWant an iPhone. I really, really, want an iPhone. The phones themselves aren't all that special; but they've captured the imagination of every software developer so there's literally an app for everything. Want do do your shopping on the move? There's an app for that. Watching a film and you want to know where you've seen that actor before? There's an app for that. Trouble sleeping at night? There's an app for that. Trying to find a laptop-friendly café? There's an app for that.

I've got an iPod Touch which is basically like an iPhone without functioning as a phone. So you can send Email using it as long as you've got a WiFi connection, you can surf the web on it as long as you've got a WiFi connection, you can Tweet on it as long as you've got a WiFi connection... Basically it's a useful little gadget until you take it out of the house and then it only functions as an mp3/mp4 player. But that's OK, because I only needed it as an mp3/mp4 player. Having an iPod Touch has given me an insight into whether or not the iPhone would be accessible to me: And the answer is a great big no.

It's a great little gadget for playing music on, browsing the web on and checking my Facebook notifications on. My access problem with it comes as soon as I start to type: It's excruciatingly painful. Typing on a touchscreen means you have to keep all your other digits held back well away from the screen otherwise they'll brush against it and type something random. And I really need to rest my fingers on my phone's keyboard like you do when proper touch typing. Having to keep my digits curled up away from the screen makes my RSI-addled arms scream "pain! Pain! PAIN!"

I know I'm not the only person to have access problems with the iPhone, check out Geoff Adams-Spink's review.

And I thought the days of inaccessible phones died along with those stupid pokey pen things ("stylus" I believe was the technical term). I can't grip an actual pen, so why on earth would a small poking device be any easier to hold?

ATMac's article about Dragon's dictation software for iPhone/iPod makes it look slightly more manageable, but a big problem with speech-to-text software is background noise. I use Dragon's NaturallySpeaking on my PC and my upstairs neighbour's TV interferes with it, so I can't imagine that dictating a text message in a noisy pub is going to work. At all.

I'm not anti-touchscreen. I think they're ace. Wanting to click a link and just being able to poke it is a brilliant thing. I just can't type on a virtual keyboard because of "ow". Which is where Google's G1 comes in. It has both a touchscreen and a slide out QWERTY keyboard. I've had a play with Lilwatchergirl's G1 and it seems to be a piece of genius. So why haven't I got one of them? Because they're only available on T-mobile and their network coverage is rubbish. Virgin Mobile use T-mobile's network and I know from trying to use my Virgin mobile broadband dongle that you basically can't get a T-mobile signal outside of London.

So I'm stuck with a rather crappy BlackBerry Curve 8520. I call it "crappy" because in many ways it's worse than its predecessor, the 8310. The 8310's camera had a flash, the 8520's does not; so you can't take photos indoors. The 8310 had GPS, the 8520 does not. And the 2D limited palette icons on the 8520 look miserable compared to the 3D multicolour picture icons on the 8310. So why didn't I return my 8520 at the end of my 14 day evaluation period and keep on using my 8310? 2 reasons: 1) The 8520 has WiFi so I can get decent speed internet on it indoors. 2) It has a web browser that works adequately, the one on the 8310 was utterly useless.

While the iPhone has an app for everything, the BlackBerry has very few apps, and most of them are rubbish:

The App World store has just about 2,000 apps available for download, compared to the iPhone App Store’s 90,000 apps or Android’s 12,000.

From http://www.wired.com/gadgetlab/2009/11/blackberry-innovative-edge/

In my experience Tweetie for iPhone is the best way to access Twitter. It's wonderful. It makes ÜberTwitter look pretty pants in comparison (but I will admit that ÜberTwitter has got a lot better lately). The Facebook app for BlackBerry has, again, gotten better recently; but it's still rubbish compared to Facebook for iPhone and I usually end up accessing Facebook on my phone via http://m.facebook.com. Absolute Radio have had an iPhone app out for ages. I got all excited a couple of weeks ago when I found out that they'd finally released their long promised BlackBerry app, only to discover that it's only for 3 models and the 8520 isn't one of them. And Safari on the iPhone makes BlackBerry's built in browser look like it belongs in the 1990s.

After all this ranting, what would make me happy? Simple: If Apple made an iPhone with a slide out QWERTY keyboard like the G1 phone. If they did bring out such a thing I'd sell a kidney to be able to afford one on the day of release. As a consolation prize I'd be satisfied if BlackBerry joined the twenteens.

Hear me roar!

2010-02-09T14:58:00.016Z

I am angry. I am really fucking angry. I don't usually get angry because I'm quite lazy and anger takes a lot of effort. I usually just roll my eyes or bang my head on my desk. They're not very labour intensive. Especially if you don't repeatedly bang your head against the desk: Just the once, leave your head resting against the desk and you're in the perfect position for a nap. See? Lazy.

I am angry with NHS wastefulness. Perhaps I should go join the Taxpayer's Alliance? Eh, nice idea, but I don't want to stop all benefits ever and force disabled people into workhouses.

My anger started about a week ago. In 2004 I was referred to the surgical appliances dept at the Royal Free for a splint for my wrist. There was a smattering of wastefulness about my referral: GPs are not considered intelligent enough to refer patients directly to SA, my GP had to refer me to orthopaedics for them to refer me to get a splint. Which seems like a waste of my time and NHS money for me to have to see an orthopod I didn't need to see. But it was a one-off ortho appt, they referred me downstairs to surgical appliances and discharged me from ortho.

Last year I saw an orthopod at UCH about my broken foot. As The Boss promised during the appointment from hell two months later I was indeed referred to orthotics for inserts into my shoes.

"Surgical appliances" and "orthotics" are two different names for exactly the same department. One hospital uses one name, the other uses the other. So, yep, I'm a patient at exactly the same department at two different hospitals. Common sense would indicate that I should perhaps get my details sent from one hospital to the other so I can have all my supporting needs met in one place: Saving my time, and most crucially, taking up only 50% of the orthotics appointment slots therefore costing the NHS only 50% of the current cost. So last week I tried to arrange for that to happen.

Of course that would be far too sensible. I enquired about the possibility and was told that both hospitals have a policy of not issuing orthotics unless they've been prescribed by an orthopod from that hospital. So thanks to stupid policies I need to have twice as many appointments as I would need if the stupid policies didn't exist, costing the NHS twice as much.

The word is "fail".

Then I started reading about the ten23 campaign. A sort of great idea. I say "sort of" because I can't help but feel that the campaign is somewhat misguided. They are aiming their "stop being so stupid" at Boots when elsewhere on the site they have this fact:

In the UK, the NHS spends around £4million every year on homeopathy and the British government supports four NHS Homeopathic Hospitals - Bristol, Glasgow, Liverpool and London. What's more over 400 GPs in the UK regularly refer patients to homeopathic clinics. With homeopathy having been conclusively proven to work no better than placebo, there is no place for it in the National Health System, and no reason to support it with money that would otherwise be used to support real, proven treatments with genuine efficacy.

From http://www.1023.org.uk/why-you-cant-trust-homeopathy.php

So, yeah, can't help but feeling that the campaign would be more worthwhile if it was aimed at stopping the NHS wasting money on homoeopathy rather than stopping Boots from selling homoeopathic "remedies". Because I care how the NHS spend their money, how A. N. Other spends his or her money down the chemists really doesn't bother me.

And then today I read this article from The Independent: The ex-gay files: The bizarre world of gay-to-straight conversion (yeah I know it was published eight days ago, I'm a bit slow).

It transpires during the sessions that she gets most of her clients through an NHS GPs' surgery near her home. She says they refer people to her for treatment for their homosexuality.

Yep, NHS money is being wasted on "treating" homosexuality, even though -- as the article recognizes -- homosexuality was removed from the DSM 36 years ago.

The NHS will happily spend twice as much money on orthotics appointments than is needed, they will happily spend millions on treatments proven to not work, they will pay for "treatments" proven to cause more harm than good, but what they won't pay for is a kidney cancer drug proven to extend life.

The NHS is a hot political topic at the moment, so why aren't the political parties all promising to stop pissing NHS money down the drain?

So I'm busy being angry. And having to go to more orthotics appointments than I need to. Grr.

Edit 21/02/10: The end to NHS homeopathy may be in sight!

2010-01-26T22:11:00.005Z

Something occurred to me on Sunday night while watching Being Human: What happens to old werewolves?

In films and shows where werewolves exist like Being Human or Buffy they're always young. But unlike vampires they're not immortal so surely they must get old and develop some degree of osteoporosis. Which means that in world's like the Buffyverse the morning after a full moon A&E departments should be full to bursting of octogenarians who went wild while wolfy and broke a hip.

I posted my pondering on Twitter and Facebook and one of my friends mentioned that he thought that when wolves turn back human that any injury would heal; I guess like vampires in True Blood when Jessica's hymen just keeps growing back. But that can't be so, at least in Buffy, because of that morning when Oz and Verruca (what a name) wake up human and covered in each other's scratch marks.

As George and Mitchell work in a hospital I think we should see older WWs coming in the morning after they got rampagey with stag hunting injuries, in the name of equality and realism. Because the lack of older wolves is clearly all that stops Being Human from being realistic.

I'm also wondering what would happen if I got wolved. Do you think a wolf me would still know how to push a wheelchair?

December 3rd = International Day of Disabled People

2009-12-03T15:29:00.004Z

At the conclusion of the United Nations Decade of Disabled Persons (1983-1992), the General Assembly, on 14 October 1992, proclaimed 3 December as the International Day of Disabled Persons (resolution 47/3). The Decade had been a period of raising awareness and enacting measures to improve the situation of persons with disabilities and to provide them with equal opportunities. Subsequently, the Assembly appealed to Member States to highlight the observance of the International Day in order to further integrate people with disabilities into society (resolution 47/88).

(From United Nations Conferences and Observances)

Yeah, OK, so then the UN renamed it the medical modelised International Day of Persons with Disabilities a year or two ago. So I'm starting off by posting the link to my fave guide to disability language.

Yes, I'm aware that American English speakers generally prefer "person first" language, but that doesn't make the term "persons with disabilities" any less medicalised/individualised in origin.

Person with disability = the person has something wrong with them, it's their body that prevents them from being equals.

Disabled person = person is disabled by barriers (social, architectural, environmental, etc) preventing them from living an equal life.

You know how when you switch off the wireless connection on your computer it says "wireless network connection has been disabled"? That means that someone has switched off the connection, it has been prevented from functioning. "Disabled people" has the same implication; we have been prevented from functioning. When you switch your wireless network back on it says "wireless network connection has been enabled," it has been allowed to function again.

"Disabled" has nothing to do with "less able" like most American English speakers seem to think (and apparently the UN too). When your wireless network has been switched off, has it become broken or less capable? No. It's just switched off. Enable it and it'll work fine again.

I'm a person with an impairment. I am disabled by steps, stairs, escalators, lack of computer access, inaccessible housing, and so on. To me a flight of stairs without a lift as an alternative is the equivalent of right-clicking me and selecting "disable Lisa." I'm not disabled by my osteogenesis imperfecta.

In other news: The EHRC has used today to launch an inquiry into disablist harassment in the wake of the Pilkington murder/suicide.

And finally: Eddie Izzard tweeted that today it's exactly 1000 days until the 2012 Paralympics (even if he did spell "Paralympics" incorrectly). Also on Twitter there's the #intdayofdisabled hashtag. Update! Now there's a Twibbon too!

Care consulation... the last post

2009-11-13T10:23:00.001Z

The consultation on care ends today!

Makes sure you've signed http://petitions.number10.gov.uk/AttendanceA/.

To be eligible to sign you need to either be a British citizen (regardless of where in the world you live) or live in Britain (even if your nationality is not British).

Also, please make sure you've forwarded this on to *everyone* you know that's eligible to sign.

The government has claimed that DLA for under 65s is safe. But that still leaves 2 problems:

1) People like me being plunged into poverty and dependence because we've turned 65.

2) The crap wording of the green paper means they could change their minds about this and take DLA away from under 65s without going to consultation again.

Bear in mind that most over 65s develop an impairment of some kind so there's a very real possibility that this might affect YOU in the future.

Save Our DLA: What now?

2009-09-08T14:13:00.003+01:00

(This is a follow up to this post.)

If you've missed the Emails from Benefits and Work suggesting how to campaign to stop the government from taking Disability Living Allowance/Attendance Allowance out of the hands of disabled people, here are the three tasks:

Task One: Contact disability charities and ask them to speak out against the proposals.

Task Two: Get in touch with your MP and tell them how important DLA/AA is.

I can't find a link to the third Email online anywhere, but it was suggesting people go to http://careandsupport.direct.gov.uk/ (the site is currently broken as I type though) and give their comments on the Green Paper.

If you're pressed for time and want to do just one quick thing that'll make an impact then this is it: The Number 10 petitions website reopened for business yesterday following the summer recess. A Save DLA/AA petition has been created: http://3.ly/saveDLA. Please sign and pass the link on to anyone and everyone you know. (The paragraph is italicised for emphasis as it's so important.)

Even if you don't get DLA/AA please sign the petition (as long as you're British). You never know if you'll need to in the future (and as most people acquire an impairment in old age, the chances that you'll need to claim AA are quite high). And even if you're not British you can pass the link on to anyone who is.

Finally the government are having a "Big Care Debate Roadshow" where you can go and tell the government exactly what you think about their plans to impoverish and remove independence from disabled people. For the tour dates see here.

Oink?

2009-08-16T18:37:00.004+01:00

Got up this morning (well, afternoon. It's Sunday and I was still stuck in a traffic jam at 00:30 last night/this morning) to find a text message from a friend I'd hung out with yesterday afternoon. She's got swine flu. Great. So I phoned NHS Direct for advice and the nurse I spoke to carried out an "assessment":

Her: Do you ache all over?

Me: I have Ostesogenesis Imperfecta.

Her: Do you have a blocked nose or difficulty breathing?

Me: I have severe chronic sinusitis.

Her: Are you fatigued?

Me: I take 4 times the standard daily adult dose of antihistamines so I'm always fatigued.

Her: Do you have a sore throat?

Me: I have a persistent sore throat from the Nasonex

Her: Do you have any muscle weakness?

Me: I have Osteogenesis Imperfecta.

And my favourite:

Her: Imagine the worst headache you could possibly have. Do you have that?

Me: I have severe chronic sinusitis. My normal headaches require morphine.

Hmm...

Save our DLA

2009-08-05T11:07:00.016+01:00

Below is copied and pasted what lilwatchergirl posted on a messageboard.

Benefits and Work sent me the following e-mail. They're looking for 1000 people to sign up before they start hardcore campaigning, in order that there are enough people on board to make a different. I think their campaign is massively important, given the serious threat to our DLA/AA and other benefits.

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Yet the government is proposing either means-testing DLA and AA, or removing it altogether. Their proposal to put the money in the hands of local councils is TERRIFYING, especially to those of us who have experienced first-hand the way that council-funded care has been limited, cut and removed from a majority of disabled people. Councils would leave DLA claimants without enough money either to fund their care or to cover their disability-related costs. The end result of this could well be the death of the poorest disabled people. Do we want to live in a society where the richest are subsidised to the tune of millions (HBOS et al), while the poorest people with the highest costs are left without enough money to fund their care, to support their mobility needs or potentially even to eat?

Benefits and Work's e-mail, detailing their campaign, is copied below. They have 300 people signed up to the campaign so far. Help them get to 1000, and then we can start campaigning.

Ideas for smaller-scale campaigns to support this one could be thought up and discussed here, too...
________________________________________________________________

Claimants have just 100 days to prevent their DLA and AA being abolished.

A government green paper has revealed proposals to stop paying ‘disability benefits, for example, attendance allowance’’ and hand the cash over to social services instead.

Under the plan, current claimants would have their disability benefits converted to a ‘personal budget’ administered by local authorities and used to pay for services,– not to spend as they wish.

Once the green paper consultation period ends in 100 days time, if an almighty row has not been raised, it is likely that both major political parties will see the lack of outrage as a green light to end both DLA and AA.

We’re looking for a minimum of 1,000 claimants, carers and support workers to join our campaign to save these benefits from being abolished. Find out how you can take part from this link:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts

We know that many people will take false comfort from the fact that, unlike AA, DLA is not specifically named as being for the axe. But if the government was planning only to abolish AA it is extremely unlikely that they would refer constantly throughout the green paper to ‘'disability benefits'’, a term which includes not just AA but also DLA.

Others will dismiss this as just another idle discussion document and our concerns as scare mongering. But it’s much more than that.

36 meetings have already been organised around the country for people working in government and the caring professions to meet to be told about the setting up of a new National Care Service which would oversee the system. In addition, a stakeholders panel of more than 50 voluntary sector organisations, trades unions and academics has been established to offer advice to the government.

Some organisations and individuals, such as RNIB and welfare rights worker Neil Bateman writing for Community Care magazine, have already voiced their alarm.

But not every disability organisation is opposed to the proposals and some even agree with them.

In a press release, Disability Alliance has welcomed the publication of the green paper and said that it ‘looks forward to working alongside Government and all the other stakeholders in bringing these plans into fruition.’ They have even said that they agree that there is a case for ‘integrating disability benefits such as attendance allowance’ into the new system.

One thing everyone does seem to agree on is that huge cuts in public spending will have to take place in the next few years as a result of the credit crunch and global recession.

Political parties are desperately looking for the softest targets to be the victims of these cuts. Dismissing the green paper’s proposals as hot air and not worth worrying about could be the costliest mistake you ever make.

Find out more about the proposed abolition of DLA and AA and how you can join our campaign to fight back:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts

Please sign. Without my DLA I'd be practically housebound, unable to afford supermarket deliveries and would pretty much have no quality of life at all. Also bear in mind that most people develop some kind of impairment in old age; Attendance Allowance, a benefit for over 65s who need assistance, is currently the benefit at the top of the "at risk" list. So signing this petition isn't just for those who are currently claiming, signing up is an investment for your own future!

Links to people talking about the proposals:

Lilwatchergirl
Bendy Girl
Batsgirl
Neil Bateman (I feel like he should be "NeilBatemanGirl" as the other people I'm linking to about this all have "somethingGirl" as their moniker. I do not wish to imply Mr Bateman is in any way effeminate; I do not know him from Adam. Or Eve.)
Edited to add: Purple Noise (OK, another person without their handle being somethingGirl)
More from Lilwatchergirl

If tweeting on the subject please try and use the hashtag #saveDLA. The media takes a lot of notice of Twitter these days so it'd be awesome if we could make #saveDLA a trending topic. A shortened, easily Tweetable link to this post is available: http://short.ie/aws3bv

Edit Aug 7th: There is now a Facebook group protesting the planned DLA/AA axe. And from Nabil Shaban (yes, he was in Doctor Who):

"First they took away your "Home Helps"
Then they took your Incapacity Benefits
They they took the DLA Care, and Attendance Allowance.
Then they took away your Mobility Allowance, and Motability
Then they forced you back into institutions
And then offered you Assisted Suicide"

Edit September 8th: The Number 10 petitions website reopened for business yesterday following the summer recess. A Save DLA/AA petition has been created: http://3.ly/saveDLA. Please sign and pass the link on to anyone and everyone you know.

Nice One, Guardian

2009-06-21T15:03:00.003+01:00

In an apparent acknowledgement of criticism of a lack of vision at the heart of government, the prime minister said he had found it hard to focus on strategic planning

From Yesterday's Guardian.

In case you've been living under a rock for the last few years, Mr Brown does literally have a lack of vision: He's blind in one eye and severely visually impaired in the other.

2009-05-31T13:29:00.005+01:00

• Jeffrey Marshall, senior organiser for the BNP's London European election campaign. Following the death of David Cameron's disabled son Ivan, Marshall claimed in an internet forum discussion: "We live in a country today which is unhealthily dominated by an excess of sentimentality towards the weak and unproductive. No good will come of it."

Later, in response to comments made by others on the site, Marshall is alleged to have written: "There is not a great deal of point in keeping these people alive after all." He said the comments were private and some had been paraphrased and taken out of context. He admitted making the former comment, but said he could not recall making the latter one in an email to the forum, a copy of which is in the Observer's possession.

From today's Observer.

Oh I wish I could show this to the bitch in the chemist on Friday who said she would be voting BNP. She was a pensioner so not contributing to the economy anymore, thus I'm sure she'd fall into the group of people Marshall would like to see dead.

I'm sure Marshall would like to start by cutting off her free prescriptions in the hope that she'd die. Rather ironic considering I encountered her in a pharmacy.

A junkie in to collect her methadone tried to explain that the BNP are racist Nazis with the same political convictions as Hitler. To this the old bag said "at least they're all English." (As a friend of mine pointed out: They're not all English. They're the British National Party, so some members are going to be Welsh, Scottish and Northern Irish.)

If I were the (Greek) pharmacist I'd have banned the cow from my shop at that point. I wonder where this woman is planning on collecting her free prescriptions when her local pharmacist has been sent back to Greece? And the next pharmacist down the road has been sent back to India? And there are no trained, qualified "English" people to take their places?

Edited to add: I've just learned this today (June 13th); Nick Griffin is one of us! He has a false left eye. I wonder if Marshall wants to drag him off to a concentration camp too?

BADD 09

2009-05-03T18:06:00.004+01:00

I still haven't written a post for Blogging Against Disablism Day 2009 for 2 reasons:

My disablist cat. Last week I was staying at my dad's. I had to come home on Thursday in order to go to Cine-Excess III on Friday. So when I decided it was time to put the cat in her carry box she disappeared. For 5 hours. I spent a good 90% of that time walking around looking for her. As everyone who knows me knows I can barely stand for 5 minutes without pain, so after standing for 5 hours 3 days ago my legs are still killing me. (I eventually found the cat inside the sofa.)

My disablist computer. The bones in my arms are funny shapes because of my osteogenesis imperfecta, so the muscles in my arms are in funny positions. This has made my arms incredibly vulnerable to RSI. So for typing anything substantial I need to use speech-to-text software. My computer decided it wasn't powerful enough to run Dragon's NaturallySpeaking so had to go to computer hospital for a RAM upgrade. It's still there.

Hopefully I should get my computer back around Wednesday. So in the meantime here are my 2 favourite posts, both exploring disablism in film and TV:

Sweet Perdition: Monkey Shines: An Experiment in Fear (of disability)

Trouble is Everywhere: BADD: Bloody Torchwood

ETA: I won't be getting my computer back until Monday, so by then I think the BADD sailboat for 09 will be well and truly passed. I was going to write something about disability in the media, but I think Sweet Perdition and Trouble is Everywhere did better than I could (at least while I'm on painkillers for my foot that make me forget what I was saying whilst in the middle of saying it). So instead I'll just direct you back to my post about how I think Susan Boyle was a victim of disablism when she appeared on Britain's Got Talent and my post on #amazonfail; specifically "edited to add"s 3 and 4 in which I talk about how the press completely failed to acknowledge that disability titles were affected too.

Sarah Connor was right about everything

2009-04-20T14:10:00.001+01:00

http://www.cyberdyne.jp/english/robotsuithal/index.html

Notice the name of the company it's made by?

Word of the Day

2009-04-19T21:10:00.002+01:00

Disdar - The ability to recognise fellow disabled people, even if their impairment is not obvious (like gaydar, but for disableds).

Susan Boyle

2009-04-18T17:43:00.004+01:00

She became instantly famous last Saturday because of her audition for Britain's Got Talent. As soon as the program aired I started reading mentions of her online, but it wasn't until Tuesday that I actually watched the YouTube vid to see what all the fuss was about.

As soon as she started talking I thought "she seems to be slightly learning disabled." I suspect that the majority of the audience, not being as disability aware as me, thought that she was just stupid:

Stupid for appearing on national television in an unflattering dress.

Stupid for appearing on national television without running a bit of Frizz Ease through her fuzzy hair.

Stupid for appearing on national television with unplucked eyebrows. Surely everyone's heard of tweezers and noticed that everyone on telly has skinny eyebrows? She must be stupid to have not noticed that.

Stupid to think that she's sexy enough to flirt with the judges.

Tanya Gold wrote in The Guardian about how Susan was a victim of 'uglyism' until she burst into song. I think she was a victim of a different ism - disablism.

It wouldn't matter if Susan's IQ was less than 70 (the typical criteria for a "learning disabled" label) or over 170... she appeared to be learning disabled, and the audience both those present and watching at home, judged her on that appearance and started discriminating accordingly.

In Yesterday's Hate Mail she "came out" as learning disabled (I don't read it, I promise. Someone pointed the link out on a disability messageboard):

She had suffered mild brain damage after being starved of oxygen at birth.

Recalling her childhood, she said earlier this week: 'I was born with a disability and that made me a target for bullies.'

Rather entertainingly that article also says "Her rather wild hairdo and bushy eyebrows have led her to be dubbed the 'hairy angel' in some quarters." - It was their paper that gave her that name!

There's a global assumption that disabled people can't have any talent for anything; and so the audience having given her the label of stupid assumed that there was no possible way she could actually be a good singer. Surely if she's too stupid to know how one should appear on TV she must be so stupid that she thinks she's got a talent even though she can't have?

And so they laughed.

Then she sang. The laughter stopped.

Suddenly everything turned round, instead of laughing at her, the audience applauded along with her.

But this applause was of course also the result of a disablist belief system. The world has such low expectations of us that when we turn out to be capable of doing something that warrants far more praise than if a non-disabled person had the same skill.

I thought Susan's performance was great, I think it's great that a disabled person has shot to fame for being talented. I think it's great that a disabled person is now admired by the disablists that were bullying her only 2 weeks ago.

I have to wonder though, would she be the global phenomenon she is if her learning impairment hadn't been so apparent during the pre-audition interview?

#amazonfail

2009-04-13T01:27:00.008+01:00

So... the internet, especially Twitter, is all a buzz with the news that Amazon has removed the sales rank from all lesbian/gay/bisexual/transgender titles. What this means is that gay books are now excluded from showing up in bestseller lists, and turn up down the bottom of search lists (if at all).

But what hardly anyone is talking about (yet) is that books to do with disability and sexuality have had their rank stripped too.

Books like Tom Shakespeare et al's sociology text book "The Sexual Politics of Disability". "The Ultimate Guide to Sex and Disability" has also been de-ranked.

The story is starting to crop up in news articles all over the world, and most articles are citing Twitter. There have also been petitions set up protesting against Amazon's effective censorship of LGBT titles. But none of these mention that us crips are getting censored too.

If you tweet, do mention something about Amazon de-ranking books on disability and sexuality also. And make sure you use the hashtag "#amazonfail"

ETA: This of course isn't the only recent disability-related Amazon fail: http://is.gd/qC8W

ETA2: This blog post explains the importance of literature on disability and sexuality. There's also another blog post on the issue here.

ETA3: Disabled people seem to be taking a double whammy in this whole thing. First our books get de-ranked. And then the mainstream press fails to acknowledge us when writing about this. It doesn't matter if it's a glitch, a new policy, or a hack - the press should be representing us.

ETA4: Amazon have apologised and said "that the de-ranking was not limited to gay and lesbian titles.... In fact, it impacted 57,310 books in a number of broad categories such as health, mind and body, reproductive and sexual medicine." Hmmm. "Health and mind and body" - their way of saying "disability" and trying to reassure LGBT customers that it wasn't just us (I say "us" wearing my lesbian hat. And I do actually have a hat that apparently makes me look very dykey). What the press still aren't picking up on was that, yes, it wasn't just LGBT titles, it was disability titles too. I even Emailed The Guardian and asked them to even give a sentence to the fact that it affected disability titles too. They haven't.

Extra Crippy

2009-04-09T19:46:00.003+01:00

You know it's gonna be a strange day when you've been patronised by 9:15 a.m. I'm not usually even awake by 9:15 a.m.

I hurt my foot four months ago. I can't pinpoint exactly when because I was painkillered up to the gills because of the post-op pain in my face. All I noticed was that it started hurting some time during the nine days my mum was in hospital between her heart attack and her death.

The delay in receiving medical attention for it was slightly my fault. I've got osteogenesis imperfecta, so if I went to see a doctor every time something ached or hurt I'd never leave my doctor's. But after two months of pain I figured it was probably worth mentioning the next time I saw my GP.

He immediately referred me to orthopaedics, but I didn't get an appointment for another two months. In the interim period I wound up in A&E one night when I found I could no longer move my foot. All they could really say was "you need to see an orthopod," but my A&E adventure in the snow did nothing to bring the appointment date forward.

So that brought me to today. I arrived at the clinic reception and the receptionist, who had been talking at a normal speed until she clocked me, s-t-a-r-t-e-d t-a-l-k-i-n-g r-e-a-l-l-y s-l-o-w-l-y. I spent the next half an hour compulsively checking Twitter on my phone and wishing that I'd ducked into Euston on my way there to pick up a copy of Metro. A hospital waiting room without any crap out of date magazines? Outrageous! And very very boring.

The first doctor I saw did not inspire me with confidence. He pronounced it "osteogenica imperfecta." Twice. Did I mention that he's supposed to be a bone specialist?

Establishing that I'm more knowledgeable and qualified than the doctor is not good.

He then proceeded to demonstrate his ignorance further by attempting to ask me about how I predominantly get around.

"In the average day how much time do you spend mobile and how much time do you spend in your wheelchair?"

"I'm actually very mobile in my wheelchair. I can push for miles."

"I mean, how much time do you spend mobilising without your wheelchair?"

"I don't do much mobilising without my wheelchair. I spend most of my time without it either sitting on the sofa or on my desk chair."

"Okay, in the average day you spend eight hours sleep. How do you split the rest of your time between immobilised in your chair, and mobilised walking?"

This circular conversation went round for a while until I let it slip that my flat isn't wheelchair accessible. I did remind him that most of my time awake and in my flat is spent either sat on the sofa or the chair, but he didn't think that laying on the sofa moving nothing but your thumb to operate the remote control is immobile, because at least it's not in a wheelchair.

He then decided to examine my foot. This was where he demonstrated that there is potentially a proper orthopod in there somewhere - he poked my foot till I screamed. I don't know why x-rays and the words "it hurts there," are never enough for an orthopod; they have to prod until you yelp.

He went to "look at my x-rays" leaving me alone in a room for a good 10 minutes with someone else's medical notes on the side. And people are concerned that computerised notes are going to lead to confidentiality breaches (I didn't look at the notes, I'm not an arsehole).

He came back with The Boss, they'd both looked at my x-rays together. The first thing The Boss asked me to do was stand up, so he could check out my flat-footedness. He then asked the first doctor "did you check that?"

"No."

"You should have done."

Then The Boss turned to me "have you always been that flat-footed?"

Which of course I have. He then also proceeded to jab the bit that I said hurt with his thumb and gave me a diagnosis; I've ripped the tendon out of the end of a bone in my foot, and yanked a lump of bone off with it. It's actually an injury I've had before, only last time it was a finger where my hand collided with the foot of a breaststroker in the neighbouring lane in the pool.

The Boss decided that I need an Aircast boot to support my foot while walking for the next few months. He wants me to come back in two months (presumably so he can poke it again) and then for me to have orthotics in my shoes to correct my super flat-footedness.

So then The Boss left leaving me with first doctor again. He walked with me out to reception, handed me a piece of paper, and told me to take it to the orthotics department. I looked at the piece of paper and asked "are you sure this is the right paper to take orthotics?"

The paper clearly said "Patients: hand this paper into reception before you leave." It also had a "next appointment" box in which the doctor had hand written "two months". It said nothing about an Aircast boot, which I figured was kinda what orthotics needed to know.

"Yes, take that down to orthotics."

"Are you sure this is the right paper to take orthotics?"

"Yes, take this down orthotics reception and they'll sort you out."

"Are you sure this is the right paper to take to orthotics?"

"Yes."

"Okay then."

Then the receptionist put on her slow voice and called me over. She handed me a paper and told me to take that to orthotics.

"But he [pointing] told me to take this [handing over paper] down to orthotics."

"No, you're supposed to hand that in here."

"That's what I thought."

At which point First Doctor came over and started getting all defensive about the fact that he was wrong. During his defensiveness I pointed out to the receptionist that someone had spilt sugar all over the counter. For some reason this observation convinced her that I was intelligent enough to be spoken to at a normal speed.

Anyway, the receptionist sorted me out with right bits of paper, and pointed me in the direction of orthotics (because the doctor didn't know where it was). So I headed down into the bowels of the building. Why is it that orthotics departments are always underground? They gave me the splint I'd been prescribed and sent me back up to the clinic to get the splint "fitted" by a nurse.

The nurse was actually really nice and friendly, she showed me how to put it on properly and inflate it. I tried standing up in it and said "erm, it's supposed to support my flat-footedness, but I can still feel my foot rolling over inside it." I took it off to show her how the boot is designed for either foot, so it's got no arch support.

She immediately understood the problem and said "I'll get the doctor."

So who did she bring back? You've guessed it, First Doctor. "You need to try it for a couple of months to see if it helps."

"I don't need to try it for a couple of months, because just standing for a few seconds I can tell that it's not providing the support it needs to." Another circular conversation ensued, with him getting progressively more and more, erm, I think "assertive" is the most appropriate word. The more wound up he got, the quieter and calmer I spoke. I think most patients would have been intimidated into leaving with a piece of inadequate equipment, but that's just not me.

Eventually I finally got through to him when I said "have you ever tried on a pair of shoes in a shop and not bought them because you could tell just from standing in them for a few seconds that they were way too big?" So he went to phone orthotics to ask for advice. He was gone for ages leaving me with just Twitter on my phone for company. Eventually he came back with a sheet of sticky backed padding to make an arch support for the inside of the boot. I thought I'd achieved success until:

I tried walking in it.

Thankfully there was a desk within reach for me to grab hold of so I didn't go splat on the floor. "I'm gonna need a crutch or something."

More drama. I was sent back and forth three times between the clinic and the basement before someone finally located a midget sized crutch in the hydrotherapy pool changing room. It's unbelievable, kids break things and need to be given crutches all the time, so how can it be so hard to find some kiddie-sized crutches in a fucking hospital?

During one of my trips down to the basement in my crutch-hunt I asked the (American) orthotist if there was a toilet nearby.

"There's a handicapped bathroom just there on the right. Erm, I mean left."

1) Handicapped?

2) An orthotist that can't tell left from right is a bit worrying. You could end up with a completely incorrect body part splinted.

Anyway, the crutch thing. Of course in an ideal world I wouldn't need a crutch because my flat would be wheelchair accessible so I could use my chair indoors. But the wait for an accessible property was years anyway, and that wait is gonna be even longer now that disabled servicemen and women will take priority for accessible housing over all other disabled people. We don't live in a time of national service, servicepeople who've become impaired in Iraq and Afghanistan chose to be there. If they get injured on the job, why should they get priority over a roofer that broke his back at work? For that matter, why should they take priority over me? I didn't choose my genetics.

So anyway, I finally had my boot with a rigged up arch support and a crutch to lean on. I got to go home!

As I was pushing past Euston station on my way back to the flat, I passed a group of four police officers talking to a group of three people. To carry on pushing I needed to cross the road by one of the service entrances into the station, but the police had blocked the dropped kerb with their car.

"Excuse me, is this your car?" (A bit of a stupid question, but it's what fell out of my mouth.) "Can you move it away from the dropped kerb so I can cross please?"

They didn't kill me, so it's all good.

When I got home I discovered that when I was in the hospital asking for a crutch that my flat had become much bigger in my imagination than it actually is. I got in, leant the thing against the sofa, and haven't touched it since. My flat is so small that wherever I am I can always reach either a wall or a piece of furniture to hang on to. So all that travelling back and forwards hunting for a Lisy sized crutch was for nothing.

This thing is a bitch to walk in. I can only walk really slowly anyway, but this has reduced me to about one third of my normal walking speed. Though I seem to have cracked it, the fastest, safest, and easiest way to walk in this thing is sideways like a crab.

Now excuse me while I scuttle crustacean stylee to the kitchen to make a cup of tea.

Update Friday 6 pm: I've given up on the boot. It was pressing/rubbing on my heel, and causing that to hurt more than the pain at the injury site!

Twitter

2009-01-28T16:52:00.001Z

In case anyone feels like following me on the increasingly popular site, my Twitter page is: http://twitter.com/lisybabe.

Happy Obama Day

2009-01-20T21:02:00.001Z

So, like everyone else in the world I was watching the inauguration this afternoon. I saw one of the reporters interview an elderly black woman from Alabama. She was of an age to have lived through racial segregation.

She basically said (I'm paraphrasing only slightly) "We had to go to separate schools where the teaching was inadequate, sit in a separate part of the bus, use separate bathrooms...."

Anyone realise that sounds a bit familiar? Disabled children STILL get sent to separate schools with inadequate teaching. Mobility impaired people have only recently got the opportunity to be allowed on the bus at all, we're still at the point of being grateful for the opportunity to sit in a designated part of the bus. Our bathrooms are always separate too.

An open letter to my mother

2008-12-15T23:54:00.005Z

Dear mum,

The nurse from the hospital phoned just as I arrived at your house on Saturday. I spoke to her and she said that your lungs had filled with fluid. She also said that you were being treated with oxygen and diuretics, that it was a common complication that they see all the time, and that we could come if we wanted but we didn't have to. She said there was no need to speed, so I drove sensibly.

In the car on the way to the hospital I was planning all the jokes I was gonna crack when we got there. I was gonna tell you about dad's daft suggestion of phoning for a police escort so we could get away with breaking the speed limit. I explained to him that you'd already completely recovered from pulmonary oedema once already, so I wasn't too concerned.

When we got up to your ward a nurse crouched down in front of me and said "mum's just gone."

I went in to see you. You looked like you were sleeping except for the fact that your eyes were open. But then, of course, sleeping with eyes open isn't uncommon in people with OI, so you really did look kinda like you were asleep.

Dad was horrified that your eyes were open and your head was leaned over to the side. Apparently you'd *just* died, why didn't you wait for me? I never saw you on Saturday and we'd only spoken on the phone for a couple of minutes. Why couldn't you let me say goodbye?

I screamed, and I cried, and I held you. You were still all sweaty from laying on a plastic-covered hospital mattress. You didn't look like an artificially laid out and made up corpse... you were you. Of the stupid things that pop into your head, one of my first thoughts while I was standing beside you was "who is going to fix my trousers with a rip down the arse now?"

Apparently I told the nurse not to pull you by your legs... I don't remember that. I do remember telling her that you hated laying down flat.

I don't think I thanked you enough for coming to London when I had my operation. It meant everything to me having you here. That afternoon when I was in so much pain that I just laid there with tears coming down my cheeks and I asked you to come as close as you could get, that meant the world to me. It was like when I was young and you'd sit with me when I was ill. And yes, all those hours you spent holding my toes when I had a broken leg...

I'm so glad that happened so recently. It means so much.

I keep thinking of things I wanna tell you the next time I talk to you, like how much Betty likes the scratch mat you bought her. And there must be a hundred times I've nearly said "I'll just phone mum and ask her........"

I'm sorry I wasn't around for your last couple of days. I'm sorry that of all the stupid things in this madness that I wanted a normal day. I wanted to go to uni on Friday and have a normal afternoon. I'll regret that for the rest of my life.

I'm sorry I never hugged you more in recent years. I just wanted to make up for it all and climb in bed with your lifeless body and never let go.

But mostly I'm sorry that all you've ever seen me do is fail. Everyone keeps saying what a wonderful job you did of raising me - and they're right; you were the best mum anyone could want. It must've been hard seeing me have the opportunities you never had - specifically the fact that I got an education; only for me to throw them away by not trying hard enough. I'm sorry I didn't work harder at uni to do better than a 2:2, because I know that education is something you wanted me to have.

And in every other area of life, you never got to see me be the person I hope I will be. I tried swimming and failed at that. I tried comedy and had to give that up due to illness. I wish my late 20s hadn't been sucked away by illness, I might not still be such a loser.

You never got to see me get married (well "enter into a civil partnership"), you never got to meet the grandchildren I hope you'll have. How am I going to bring up kids without you to phone every 10 minutes for advice? And of course, you never got to see me have a career. You never even got to see me finish the MA I should've completed by now if it wasn't for my sinuses.

I hope one day I can be the daughter you deserved.

I love you more than I ever told you. I wish I had told you.

Lisa

P.S. You couldn't have waited a few years until the DDA filtered through to the funeral industry, could you? I'm having a hell of a job finding a suitably funereal accessible vehicle for me and dad.

2008-12-13T16:29:00.002Z

So, illness got the better of me, and I never did finish NaBloPoMo. Oh well.

On Nov 25th I finally got the sinus surgery I've been waiting for for about 3 years. Yay!

Except 9 days later, my mother had a heart attack. She's still in hospital in Colchester.

My body is trying to divert all its energy and resources in the direction of my nose for healing purposes, while I'm trying to use all my energy in driving up and down the A12.

Needless to say that I think the biggest loser in my body's energy war is me, and I'm knackered.

NaBloPoMo 10: Disabled zombies?

2008-11-10T17:25:00.000Z

Death is a disability, not a superpower. It's hard to run with a cold, let alone the most debilitating malady of them all.

NaBloPoMo 9

2008-11-09T17:24:00.000Z

Ill. Still.

NaBloPoMo 8

2008-11-08T21:50:00.001Z

I'm really fed up with being ill now. And I've run out of Tunes.

NaBloPoMo 7

2008-11-07T17:55:00.000Z

After a couple of days of feeling a little better, today I feel rotten again.

NaBloPoMo 6: The Crip Eating Monster

2008-11-06T18:06:00.002Z

Today I ate crips. No, really.

Despite feeling like death not even warmed up, I dragged myself down to the Royal National Throat Nose and Ear Hospital to see the surgeon that's going to be operating on my nose and sinuses.

The majority of staff at the hospital couldn't tell their arses from their elbows if they were clearly labelled. Fortunately I do have some faith in the surgeon, even if I'm concerned about whether or not the other hospital staff will be able to get me to the theatre on time. Or at all. He laughed, and then apologised when I told him about my pre-assessment telephone interview.

"What is your exercise tolerance?"

"My what?"

"Your exercise tolerance. Can you walk long distances?"

"No. I'm a wheelchair user. But I can push long distances."

Then about 10 mins later:

"What drugs are you on?"

"About 15 kinds. Where do you want me to start?"

"With the most important."

"They're all important. I'll start with the ones relevant to the condition I'm being operated on for."

[4 drugs later]

Her: "OK, just one more."

Me: "Well, I've still got about 10 different ones left."

"What do you take for your muscles?"

"What?"

"What do you take for your mobility."

"Erm... nothing..."

*headdesk*

She had to hang up, check with a supervisor if she needed me to carry on reading the rest of my drugs list, and call back. It just got better.

"You need an adult to bring you in."

"Why? I know I'll need an adult to take me home because of the anaesthetic, but why to bring me in?"

"It is because you are a wheelchair user."

"What? I'm a big grown up 29 year old, I can get myself to the hospital."

"You live alone!?!?!?"

So my surgeon sent me up to pre-assessment in person to redo the interview on the basis that my info was written down by an idiot.

I'm still all viral and achy and tired and bleurgh. By the time I got home I just wanted to sleep. But I was starving and too exhausted and utterly spoonless to cook, so I went to grab some grub from the café round the corner. I was so hungry that I couldn't even face the 5 minute wait for a jacket potato to be delivered to my table, so I turned to the crisps rack behind me...

When I noticed they were selling Crips

I had to.

There are some fantastic quotes on their site... "Crips are everywhere!" being possibly my personal favourite.

Don't understand the whole animal advertising thing though. My Sea Salt & Balsamic Vinegar Crips had a picture of 2 dogs on the packet. Neither of them were in a doggie wheelchair. False advertising, that's what it is. I want to know what's inside my packet of fake crisps from looking at the packet. Yes, Crips should be advertised by real crips.

NaBloPoMo 5

2008-11-05T20:01:00.002Z

Still feeling a bit foggy, but my virus appears to be subsiding slightly.

On Sunday fearing I may have tonsillitis I dragged myself to the NHS Walk-in Centre at Charing Cross Hospital, where they've got a Walk-in Centre, a Minor Injuries Unit and an A&E in one. You register at reception, get seen by a triage nurse, and they decide whether or not you should be seen as a walk-in patient, a minor injuries patient or an A&E patient.

Despite only having suspected tonsillitis the triage nurse put me down as an A&E patient. I'm assuming that was because of the wheelchair. I wanted to hit my head against things - there's an A&E dept within walking distance of my flat. If I wanted to go to A&E over a sore throat I'd have gone there, instead of dragging myself halfway across London, getting lost in Hammersmith due to the hospital not being signposted and having to resort to calling my mother in Clacton to get her to look up a map online and give me directions to the hospital.

Grrr.

So, anyway, I was seen within a matter of minutes. I wish my waits in A&E had been that short during my childhood when I could've been eligible for some frequent visitor reward scheme on account of breaking my arms all the damn time.

I was seen by a nurse who only cared about why I used a wheelchair.

"My throat hurts and my nose is bleeding about 5 times a day. I've got chronic sinusitis and am on the waiting list for surgery."

"So, why do you use a wheelchair?"

"Osteogenesis Imperfecta. But, sinusitis! Nose bleeds!"

"How do you spell that?"

"O-S-T-E-O-G-E-N-E-S-I-S I-M-P-E-R-F-E-C-T-A. But, sinusitis! Nose bleeds!"

"Is that like a spinal thing?"

"Literally translated from Latin it means 'imperfect bone formation'. Sinusitis! Nose bleeds!"

"Have you had it long?"

"What? The sinusitis or the OI?"

"OI."

"Erm... since birth? Sinusitis! Nose bleeds!"

Meeting a medical professional more interested in OI than what I actually went in for is nothing new. Meeting an A&E nurse who's never met someone with OI is more shocking. OI is pretty rare, but OIers do make up a fair amount of the traffic that goes through A&E depts, what with the frequently breaking bones thing. I spent so much time in X-ray as a child that two of the first words I learned to read were "danger" and "radiation"!

After all that, he finally looked down my throat, saw no pus, decided I just had a virus and sent me home with the instruction to drink lots of hot drinks.

Like I need to be told to drink copious amounts of tea.

P.S. Yay! Obama! Roll on January 20th.

NaBloPoMo 4

2008-11-04T19:58:00.002Z

Still got cotton wool for brains. Let's hope American voters are capable of thinking more clearly than me.

NaBloPoMo 3

2008-11-03T15:16:00.000Z

Still ill. This could be a very boring month of daily updates.

NaBloPoMo 2

2008-11-02T03:39:00.000Z

Still ill.

NaBloPoMo 1

2008-11-01T03:35:00.000Z

I was thinking of doing NaBloPoMo, except illness stole my brain and replaced it with cotton wool.

2008-09-08T16:12:00.004+01:00

Big Brother is over for another year. Hurrah! It is now safe to tune in to channel 4 and E4 once again.

This series there were not just one, but 2 disabled housemates. Prior to this series they've had only one disabled contestant, Pete Bennett. He won.

Both Darnell and Mikey survived the entire series (I make it sound like that episode of Doctor Who, don't I?) and made it in to the final.

I also understand that the first American BB was won by an amputee.

TV companies have always been hesitant about putting disabled people on TV. Surely if nothing else, BB proves that viewers *like* having disabled people on their screens and *want* to have disabled people on their screens.

After all, if viewers didn't want to see the disabled contestants, they'd have been voted off ages ago.

The motivations for wanting to see disabled people on screen is almost certainly because they can get away with staring at someone different, which they get embarrassed about doing in real life. Or they end up having an accident. I just love it when people get so engrossed at staring at me, the lady in the wheelchair, crossing the road that they forget to look right and left themselves before stepping into traffic. But Big Brother means they can gawp at us from the safety of their sofa, without the risk of getting hit by a car.

But, motivation is irrelevant. The public have voted that they want to see disabled people on TV. Isn't it time the TV companies paid attention?

Of course, TV companies aren't paying attention. I understand from a friend that not one American TV station is covering the Paralympics. NBC even branded themselves "The Olympic Broadcaster" (or something like that), but they're not showing the Paralympics. Even though at the end of day 2, the US is at the top of the medal table. You would think disabled and non-disabled Americans alike would want to take pride in their success, especially seeing as so far their Paralympians are doing better than their Olympians did.

Here in the UK we're doing rather better. We've got six hours coverage a day via the digital "red button" option on our tellys. Then every evening there's a highlights show on one of the main channels. Those of you in countries where you're unable to watch the games on your TV might be interested to know that the torrent site UKNova is uploading the BBC's nightly highlights programme. Don't bother to ask me for an invite code though. The site doesn't do them. You just have to keep hitting the "signup" page until an account "vacancy" becomes available.

The Beeb's Paralympic website is also mostly excellent (some of the journalism is rather sloppy; for instance apparently Darren Kenny "suffers from" cerebral palsy. Even though he's just won Paralympic gold). But the video files are only available to those connecting to the net in the UK.

When Big Brother started in 2000 I never, ever imagined I'd say that there were lessons to be learned from it. Even more unbelievable is that the lesson that can be learned is that viewers want to see disabled people on TV.

NBC, the so-called "Olympic Broadcaster" could certainly learn a lot from it.

Disablism Vs. Ableism

2008-05-01T21:19:00.004+01:00

It's BADD again. I don't mean that things are bad again. Although today kinda has been -- I should have been at a cult film conference, instead I spent the day sitting at home waiting for an engineer from Virgin to come and fix my TV and phone.

Blogging Against Disablism Day has come round again. I didn't participate last year, so my last BADD entry was in 2006.

There are a lot of things I hate; doing dishes, mornings, people with gross fungal toenails who wear sandals (they make me feel sick -- seriously -- treat them or hide them), the cat peeing in my bed, disablism (obviously), and there is a word I really hate: Ableism.

Those of you who don't know, "ableism" is the American/Australian word for "disablism". And I think it's ludicrous.

For one thing it reminds me of those ridiculously over-PC words like "handicapable" or "differently abled", which are only used by people who are trying to pretend that disability doesn't exist.

Secondly, it's unclear what it actually means. If "disablism" is discriminating against people for being disabled, surely "ableism" is discriminating against people for being able? In season three, episode 18 of My Name Is Earl, Earl and Randy go into a "wheelchair bar". In this bar there are no chairs, so it's obviously discriminating against people who are able to walk thus haven't brought their own seat with them. That's what I would call "ableism". In reality, in the UK it is illegal to discriminate against someone for being disabled, but it is legal to discriminate against someone for not being disabled. So for example, it is legal to advertise a job as being for disabled applicants only. This I would also call "ableism" (though I don't think this is wrong).

Someone on an Internet message board I use started a discussion on ableism. She was Australian, and angered that she had tried to introduce a non-disabled person to the concept of ableism. The non-disabled person laughed at such a ludicrous term.

Obviously I did too, because it's a silly word. But this person laughed, because she didn't believe that such a thing existed. I wonder if she would have still laughed if Australians used the more accurately descriptive word "disablism". On that thread several people mentioned that they struggle to get non-disabled people to understand concepts of ableism. I never have any trouble getting people to understand disablism; could this be because of the language I use?

I believe that calling disablism "ableism" is akin to calling racism "whiteism". I've heard some people disagree, and argue that grammatically "ableism" is more correct. I fail to see their point. If "racism" is discrimination on the grounds of race, surely it is logical that the word for discrimination on the grounds of disability would be "disablism"? I shall await the barrage of comments from people who have studied the English language in greater depth than me pointing out why I'm an idiot.

So my appeal for this Blogging Against Disablism Day is for us all to call disablism what it really is. If we are using a word like "ableism" which tries to pretend that disability doesn't exist, how can we fight against discrimination on the basis of disability? If we're trying to pretend that disability doesn't exist, then how can discrimination on the basis of it exist? "Sexism", "racism" and "homophobia" are used by English speakers the whole world over. How are we supposed to expect non-disableds to fully understand concepts of disablism if we can't even come up with a unified word for it?

Say it with me people: Diss-A-Buh-Lism. Then go and read what my cat had to say for BADD.

Edit May 8th: Thanks for all the comments on this post. I was especially interested by the thoughtful comment by maudite entendante in which she said:

Highly Obvious to me that the "abl-" in "ableism" is just the prefix form of "ability" (because, really, "abilityism" just isn't a possible English word), and it means "discrimination based on [amount or type or category of] ability"

Looking at the term "ableism" in that context makes it clear that "ableism" is derived from the medical model of disability - the idea that a disability is something we have, that we are disabled by a lack of ability.

I'm a believer in the social model of disability, the idea that we are disabled by barriers which prevent us from living as full and equal citizens.

The term "disablism" doesn't have such obvious medical model roots. Another reason why I think this term is superior.

2008-03-25T14:55:00.001Z

"There were commodes as well."

Using a commode in front of half of Central London?

I think I'd rather wet myself...

2008-02-02T17:01:00.000Z

I am getting really pissed off with, well... Piss.

I know I only go in to university one day a week so I shouldn't let it bother me this much. But, yuck.

There's a man who uses the disabled toilet in the building I have lectures in and wees *everywhere*. And I know it's a bloke because women aren't anatomically designed to spray that liberally.

Some days the room is more like a swimming pool. Except it smells more like wee and less like bleach of course.

I know that some people live with incontinence and sometimes accidents happen. But, seriously... clean it up! Have a little respect for your fellow humans.

One day I'm going to slip over in the wee and wind up on the floor, with a broken leg, covered in his urine. You'd hope that the police could test the DNA on the wee all over my clothes and charge him with some kind of assault for setting off a chain of events which left me injured. But that doesn't even happen in CSI so it's certainly not going to happen in real life.

And it's not just the floor... it's the seat too! I know most women squat rather than sit when faced with a grim loo, but some of us aren't physically capable of that. If I try squatting I just fall down. And land in his pee. Lovely.

So, I decide to find a safer, less vile toilet. What do you do when leaving a toilet? Turn the door handle. And, yup, that's always wet too.

"I would've gotten away with it too if it wasn't for those pesky disabled people!"

2008-01-22T11:28:00.001Z

A couple of months ago I blogged (very briefly) about Katie Thorpe.

I've been offline for the past few days. I haven't been doing anything interesting... The cat and I took up Synchronised Sneezing, I've read a few essays about Buffy, but mostly I've just been sitting on the sofa watching CSI (hey, I'm doing a Masters in Cult Film & TV... watching CSI is therefore technically studying).

Not having been staring into my computer screen means I've not been keeping up with the news... I rarely watch it on TV or listen to it on the radio, I get all my news from online sources.

So, I was both shcoked and pleased to switch on my computer this morning to find that I had an Email from Scope. Shocked because they're not my most favourite of charities so I was stunned to find myself on one of their mailing lists. But pleased because the Email was the first time I'd heard the news that Katie Thorpe has been spared uneccessary surgery. A quote from Katie's mother in that article that would be funny if it wasn't so disturbing:

"People who don't know Katie, who don't fully understand our situation have actually been swayed by the minority of the disability rights organisations."

Damn those pesky disabled people fighting for the right to not be needlessly mutilated.

In recent months I've started to notice something quite chilling going on. All minority groups have their hate-filled opressors, and disabled people have more than most. But, recently, the people shouting the loudest about why disabled people shouldn't be allowed human rights are the parents of disabled children!

I read an article, or perhaps it was a 'letters to the editor' type thing by a parent, or parents of autistic children. They were basically claiming that the National Autistic Society is bad and wrong and fails to support "real" autistic people. Why? Because they employ autistic people. According to the article people with autism know nothing about it. They claimed that the only people that truly understand autism are the parents, and people with autism have no right to claim that they do know anything about it. I can't remember where I read this, but, if it rings a bell and you know where I can find this story, please comment.

That a parent can claim that their children shouldn't have the right to speak out for themselves, or that their children shouldn't have the right to avoid unneccesary surgery simply beggars belief.

Fortunately, for once, the disabled people are coming out on top.

2007 started with Ashley X hitting the news. This spurned several wanna-copycat cases, like Katie.

Hopefully 2008 beginning with the news that Katie is safe will bring a better year for young disabled girls everywhere.

2007-12-12T15:28:00.000Z

Mice genetically altered to not fear cats.

Why?

Mice aren't scared of the smell of cats anyway! If they were, they wouldn't keep sneaking into my flat and winding up suffering from death by cat's teeth.

Unless some of these specially bred mice escaped and managed to make their way all the way from Japan to the Somers Town area of London...

2007-11-10T13:17:00.000Z

Dear Anonymous commenter who keeps leaving me dissertation length comments telling me my "disability is a punishment from the gods."

Fuck off.

Yours so not faithfully;

Lisy Babe.

2007-10-13T22:57:00.000+01:00

I think I need some help. I'm wondering if there's an "anonymous" group for my particular problem.

I'm addicted to... CSI.

And I really do have a problem. Despite having all the DVD's so far, I still feel the need to stay up late every night to catch the odd episode on Five US.

Fortunately I'm a student at the moment, so I can afford to stay up late watching TV and then sleep all day. But it'd be nice to see some daylight once in a while.

And you'll be interested to know that the main cause of my obsession with the show isn't Jorja Fox and those wonderful eyes of hers. Though of course she does add an extra level of enticement to the show.

The main draw for me is that it's probably the best representation of disability to have ever been shown on TV.

On several TV shows we've seen disabled doctors... Kerry Weaver in ER and of course House. Why is Doc Robbins in CSI so different?

He's played by a disabled actor, Robert David Hall.

When I was an undergraduate I remember watching a documentary in which a black woman was reminiscing about when she first got a TV. She said something to the effect of "whenever there was a black person on TV my friends and family would call each other to tell them to switch on the TV quick!"

Sadly, disabled performers are so rarely spotted on the small screen that disabled people still do this today. Even the BBC hosts a messageboard called "Quick! I've seen a disabled person on TV!"

The other fab thing about Doc Robbins is that his impairment is such a non-issue. Usually when we see disabled people on TV they're either a villain (think Roger Lloyd Pack's character creating the Cybermen in Doctor Who) or they're burdensome or overly brave for just living their lives (just look at all those "freak shows" they show on five). Certainly their presence is usually all about their impairment - it certainly seemed to me that the only purpose for the character of Brenda in The Office was to make statements about her being a wheelchair user. The same with the baby with Downs on Eastenders, all the storylines were about the Downs, never about the baby as just a baby.

Doc Robbins on the other hand just gets on with the job, and the other characters see him as a medical examiner, not just as a disabled person. In fact, I can only think of his impairment getting mentioned a couple of times - in one episode he began an anecdote with "before I lost my legs..." and in another he got something stuck in the sole of his shoe. Instead of removing his shoe to deal with the offending object, he took off his whole leg.

CSI with the character of Robbins makes disability "normal". Which of course, it is. With roughly 18% of the population in both the US and the UK having some kind of impairment, disability is normal. Though every other show on TV would never have you believe that. I've been waiting and wishing a TV show would show disability in such a way. In fact, I can quite honestly say that CSI is the show I've been waiting for my whole life.

It's important to show disabled people as normal on TV. This summer while volunteering on a FOCUS project one of the young people said to me "before I met you, I was scared of disabled people. I thought they were 'different.' Now I've got to know you I realise you're just like anybody else." I can do what I can to help both disabled and non-disabled people see that disability is "normal", but I just don't have the power to reach as many people as a popular show like CSI.

We're in the 21st Century, yet being a wheelchair user makes me so "freaky" that I can actually cause accidents. People get so engrossed in watching how the-lady-in-the-wheelchair crosses the road that they forget to look right and left before stepping off the pavement themselves. We need more disabled people on TV for non-disabled peoples safety.

Sadly, even CSI doesn't get it right all the time. The episode Sounds of Silence features the murder of a Deaf boy. One thing the show did very, very well was to highlight how even the most apparently open-minded of people, who'd never make a racist or homophobic remark, often have disablist prejudices. Sara and Warrick, two "good guys," make gross assumptions about the needs of Deaf people. The ever adorable Grissom of course puts them right.

What bothered me about this episode was the fact that it painted segregated educational institutions as a solution, not a problem. The victim was beaten up because he hadn't heard 2 guys shouting at him. The episode implies that if he'd stayed in the safety of a segregated environment, and not ventured "out there" he wouldn't have been killed. What the writers failed to acknowledge was that if Deaf and disabled people were allowed and encouraged into education alongside their peers, non-disabled people would have a greater understanding of disability. If the killers had had a Deaf kid in their class at school they might have thought "hey, maybe this guy's deaf?" Rather than jumping straight to "this guy's an arse for ignoring us."

The episode A Little Murder is largely great (I say that through slightly gritted teeth just because so much disability-related language that's acceptable in American English is offensive to me as a British English speaker). Almost all of the guest stars in this episode are of restricted growth, not to mention the whole hotel full of extras. And once again the show brilliantly highlights the sad reality of the fact so many people have disablist prejudices. In this episode the investigator that has his disablist ideas corrected is Nick.

Even before the opening credits have rolled, the writers got a dodgy comment in. And surprisingly they gave that line to the usually wonderful Grissom...

"Being a dwarf doesn't mean you're disabled Nick, it means you're... short."

I bet everyone with dwarfism claiming Disability Living Allowance is hoping that a decision maker from the DLA office doesn't see that episode.

The episode goes on to acknowledge some of the many disabling barriers dwarves face (one example given is handrails on stairs not being appropriate heights), and Grissom seems perfectly aware of these barriers. So why on earth would he think that dwarves aren't disabled? Does he really belive those barriers have no effect on a persons ability to participate in everyday life? (I am of course using the Social Model definition of "disabled".)

Robert David Hall and the cast of A Little Murder aren't the only disabled actors to have appeared in the show. There was an episode (Snuff) in which the team investigated the murder of a stable hand with Downs Syndrome, and the victim was played by an actor with Downs. This positivity towards hiring disabled actors makes the episode XX seem so sad - the fact that they cast the non-disabled T R Knight (of Grey's Anatomy fame) to play a learning disabled man.

Another episode which featured a non-disabled actor "spazzing up" is One Hit Wonder, in which Elizabeth Mitchell (Juliet in Lost) plays a wheelchair using attorney. You could in this case argue for the casting of a non-disabled actress, the character had an acquired impairment and was non-disabled in the flashback scenes. But there have been instances on other TV shows of a blind actor faking sight in a few scenes before the character went blind, and of actors with no arms wearing prosthetics for a few scenes until the character's arms were lost. And lets not forget Cherylee Houston playing a non-disabled woman in one sketch on Little Britain.

The issue with this episode in my mind was what I call "The Glen Hoddle Mentality" - that disability is a punishment for sinning. The character became disabled when she shot her husband. Before he bled to death, he grabbed the gun and shot her back. But, not all disabled people are angels, and these things do happen. And I think the fact that CSI has such a positive history in terms of it's realistic representation of disability that it earned the right to "get away with" this episode.

And this is just the tip of the iceberg, we've seen an episode with an autistic witness (Caged) and the murder of a girl with bipolar disorder (Recipe for Murder). In the episode Living Legend there's even an acknowledgement that disabled people can be victims of Hate Crimes.

While CSI might not make it to the almost one-in-five ratio of disabled people that would truly reflect real life, it does better than any show I've ever seen to have come before it. OK, Twin Peaks might have just about gotten the numbers in (Eileen Hayward, Johnny Horne, Nadine, Leo, Gordon Cole, The Man From Another Place, The One-Armed Man (who so obviously actually had an arm under his shirt), The Log Lady, Andrew Packard, and I'm sure Andy had some degree of intellectual impairment) but it was hardly groundbreakingly positive in its approach to depicting disability like CSI. I mean, the show Twin Peaks itself isn't even accessible to all - several episodes contain strobe lighting which can trigger seizures in those with photosensitive epilepsy.

The good thing is, since CSI we've had the spin off CSI:NY - another disabled doctor! This time played by the wheelchair using actor J. Grant Albrecht

I sincerely hope that future programme makers consider the success of CSI and the fact that disabled people make up such a significant proportion of the population. If we're all phoning our friends and telling them to tune in, like that black woman, we can make a real difference to audience numbers. I wonder how many other CSI fans are so engrossed because of it's representation of disability, like me?

Disabled 15 year-old girl to lose womb

2007-10-07T13:44:00.000+01:00

Oh look.

The "Ashley 'Treatment'" is coming to the UK.

I'm disgusted.

2007-09-27T22:11:00.000+01:00

I've just finished reading Stephen Fry's essay on fame. I certainly found it a thought provoking read.

I often think there are a lot of similarities between being famous and being disabled.

Firstly, people will always remember meeting you. I can remember the exact date I first met Sharleen Spiteri. I remember sitting next to Matt Lucas on the tube and him pointing out that my jacket pocket was undone. I remember crossing a road in Regents Park in the opposite direction to Derren Brown. I remember that New Year's Eve spent at the same event as Hannah Martin from Neighbours. And I bet there are millions of people in this world that I had a brief chance encounter with who will also remember me for years, if not their whole lifetime. People whom I've met once often approach me and talk about the last time we met. "I'm sorry, my face recognition is appalling," is really all I can say back.

Secondly, people always either talk to you or avoid you because of who you are. I've been in bars where there has also been someone off the telly and hearing my friends go "I'm going to talk to X." Or alternatively "I can't talk to X... they're famous!" People react the same way to me. I either get people wanting to know "What happened to you then?" Or of course, people avoid me like I've got the plague because "I can't talk to her! She's in a wheelchair!" That last response is particularly pesky when they're serving at the bar and all you want to do is order a pint.

Thirdly, people think they have a licence to just come up and talk to me in the street/supermarket/other public place.

Stephen says:

There are days when try as I might I cannot go unnoticed. It’s as if I’m walking around with a neon sign over my head. Every cab driver, everyone I pass in the street, every shop assistant stops me and asks for an autograph or photo (of which more later). I can lower my head, concentrate on looking anonymous, but it’s no good.

OK. I don't get asked for autographs. Instead I get asked "Were you in an accident?"

Stephen summarises that paragraph by saying:

‘Weird, I’m really famous today,’ is how one might put it.

And I know exactly how he feels. Some days I seem (in the eyes of other people) to be more disabled than on other days.

Famous people are not allowed to be in a bad mood in the way that everyone else is.

Neither are disabled people. You may remember in this post I worried about giving "The Disabled" a bad name. Very often I just want to tell people to "fuck off," but know that I mustn't.

If I were to ask one thing of people in their interaction with the famous it is this: consider the companions. Imagine what it is like to be in the company of a well-known person, a person who could be your brother, sister, mother, life-partner, school-friend, client, patient. You’re chatting away and someone barges in on your conversation. They completely ignore you, indeed often literally elbow you out of the way, planting their back in your face.

Something else I can empathise with. It's amazing how many of my non-disabled friends get more bothered by the way "Ordinaries" talk to me and treat me than I do.

Finally:

Robbie Williams can walk around Los Angeles without being recognised

Interestingly, I too can wander round LA without being harassed in the same way I am in the UK. Quite simply because LA is so brilliantly accessible, wheelchair users can get everywhere - so we are everywhere. In contrast, London with it's steps everywhere, it's almost totally inaccessible public transport system, etc disabled people are rarely seen or heard. Who'd of thunk me and Robbie would have something in common?

I'd like to be famous actually. As Stephen says, in many professions, fame is a measure of success. It would be nice to have people recognise me in the street because of something I'd accomplished, rather than just approaching me because I look different.

Trouble is, if I was "famous" - would I notice the difference?

2007-09-25T21:39:00.000+01:00

Today I was on my way home from a meeting, and I was starving. So, even though my bank balance hates me for it, I stopped off in a restaurant to grab some dinner.

"You look like you could be this person who used to come in here 2 to 3 years ago, 2 to 3 years.... older," said the waiter who cleared away my empty plate.

When he paused before "older" I was expecting him to say something like "fatter" as you could tell he was clearly searching for the most polite word.

Earlier on in this conversation he'd mentioned that this person was a HE.

I know I've got broad shoulders, but do I really look like I used to be a man?

I think he was just doing that thing that so many people do, assuming that there's only one wheelchair user in the world, and we're all the same person. Laurence Clark wrote an article about the phenomenon here. As you can see from that article, I'm not the first disabled person to be mistaken for someone of the opposite gender, because someone has paid attention to the wheelchair, but no other identifying facets of the person in question.

I know my boobs aren't very big, but they are there. This is why I like to wear T-shirts with writing across the chest to draw peoples attention to them.

Today was the second time in 5 days I've been mistaken for any old wheelchair user. On Thursday I was on my way to the Fresher's Fayre at uni, when a member of staff from one of the halls of residence came marching up to me.

"Did you get your stuff moved across alright?"

"I don't live on campus..."

"Oh."

I wonder if there's someone out there still struggling to move all their belongings from one hall to another, just waiting for someone to offer them some help...

2007-09-22T21:16:00.000+01:00

Earlier this evening I was pushing from Holloway to Finsbury Park. You see, I was on my way to my nearest Lidl, which is in Finsbury Park, following a tip off from my Mum that in her local store they currently had cat food that my cat can actually eat.

Me and my pussy are very well matched when it comes to food sensitivities.

What I was unaware of before I set off on my journey was that Arsenal were playing at home. And I was trying to get to Lidl at the same time as the crowds were trying to get out of the stadium. Bad timing.

The number 29 bus was going nowhere, so I decided it'd be quicker to get off and push the rest of the way.

This guy walking in the opposite direction to me stopped and pressed himself up against the railing fencing the pedestrians in. I'm used to this reaction from crip-phobes who can't bear the thought of having to share a pavement with a wheelchair user. Like most people who do this, he watched me as I approached.

Usually though, people resume walking once I (the dangerous, terrifying wheelchair user) have passed. I noticed out of the corner of my eye that he didn't. So I looked over my shoulder and he was still staring at me. Obviously at this point I shot him an evil glare. Most gawpers usually take that as their cue to stare at the floor. Not him.

"You're beautiful!" He cried after me.

Which makes the second nutter this week.

First there was the odd, drunk, smelly bloke I met on a number 29 bus coming home from dinner at a couple of friend's house on Wednesday night.

He was asking the usual, boring old "how long have you been in a wheelchair?" crap that all random strangers want to know. Then he said:

"Well, at least you've got a pretty face. If you were single, I'd go out with you."

Obviously, I didn't mention that I am single. I just nodded.

What is it with people thinking that having a pretty face will melt away all access barriers? (He's not the first). Come to think of it - why do only odd ones who think pretty faces remove access barriers think I have a pretty face anyway? Why can't any hot women ever think that?

I'm starting to think the being single is like being unemployed.

You know how the longer you've been unemployed, the lower your chances of finding a job?

I think people look at prospective partners in the same way as employers look at prospective employees.

"Well, they've been on the shelf for a while. Are they up to date with modern techniques and practices?"

Being 28 and having never had a "proper, grown up" relationship I'm starting to feel how I imagine I'd feel if I was still looking for my first job.

"Well, she's never been in this situation before. How can we guarantee she's got the skills to cope? She's never had to use them. Does she even know how to respond to certain situations? Does she know the rules and etiquette?!"

I've had a couple of conversations about this. One person pointed out that "It's also easier to find a new job when you've got one already." A sentiment echoed by another friend when we were having a conversation about polyamory.

"I think polyamory is just unfair... why should some people get hundreds of partners when I can't even find one?"

My friend went on to point out that I'm the only non-poly wheelchair user that she knows. I was pushing over cobblestones at the time, which is about as close as I come these days to intimacy.

2007-09-20T22:38:00.000+01:00

Just now I was flicking back through old blog entries looking for something when I stumbled across the first paragraph of this entry.

I have some shocking news dear readers: Today was my second day back at uni proper. On a Masters course.

Yeah. I know what I said 2 years ago. But I've been bored! And unemployed! At least this gives me something to do, and will (hopefully) make me more employable at the end of it.

I say hopefully, because, well, my MA is in Cult Film & TV. That's right - I'm getting a Masters in watching scary movies and Buffy.

Wish me luck!

It runs in the family...

2007-09-09T16:02:00.000+01:00

Did you know that my cat Betty is a supremely talented blogger as well?

Betty's Blog was yesterday's Catster.com Diary of the Day!

I suppose she deserves some kind of treat for that really.

2007-09-04T01:03:00.000+01:00

I'm finding it hard to adjust to being back in the real world.

I know I was only on a FOCUS project for 6 days... And that was nearly a month ago. But I still haven't quite gotten into the swing of being back in reality.

One of the things I love most about FOCUS is that the staff and other volunteers simply see me as me. They respect me for my knowledge, skills and experience and don't judge me on the basis of my impairment. If you're disabled and reading this I'm sure you can appreciate straight away how far removed such a simple thing is from day-to-day life.

I've been fortunate enough to be able to spend some quality time with other volunteers that were there since the project. LilWatcherGirl and I went to see Harry Potter and the Order of the Phoenix at the IMAX together, for example.

"Right, you hide, I'll hail the bus. When the driver gets the ramp out, appear and get on behind me before the driver has the chance to close the doors!"

Because London buses only have one wheelchair space. As we wandered towards the bus stop we had a little discussion about how we were both going to fit in the one space. Oh, if you can catch a bus without having to have a strategic planning meeting you really don't know what you're missing.

It was coming home from the cinema that night that I really missed being in a FOCUS bubble for the first time. Sure, the project didn't exactly run smoothly (*cough* understatement *cough*) but there were some amazing people there. As LWG and I boarded at the rear ramped door, LWG's OtherArf, being a walkie, boarded at the front door. I heard the driver ask her "Where are they getting off?"

If I wasn't so throughly exhausted (this was a Tuesday, on the Sunday night I'd been up all night with sinus pain, and on the Monday I'd been up all night from taking Sudafed which is kinda like speed) I'd have burst into a screamy rage at him. How dare the driver ask someone else questions about me?

For the record, I don't take sugar.

But, I was too exhausted to fly off the handle. Instead I sat and pondered how much the real world sucks.

The bank holiday weekend was awesome. 4 of us volunteers spent the weekend together in Manchester. I don't really drink much alcohol these days; in fact, so little that I'd kept track of all the alcohol I'd drunk so far this year.

Until the bank holiday. Good times.

Being with a group of FOCUSy types out in the real world is kinda strange, but also very cool.

Being out in the real world I was subjected to the usual rubbish: people patting me sympathetically on the shoulder, people grabbing me and trying to push me, etc, etc. But, I had my bodyguards! Oh yes.

On the Sunday night we were indulging in some dirty street drinking (seeing as none of us could afford bar prices). Being FOCUS folk we all know the FOCUS dance routine to "Shake a Tail Feather" (from The Blues Brothers). And, having had a few drinks we decided that dancing to it on Canal Street would be a wonderful idea.

So, there we were quite happily getting our twist on, minding our own business, dancing away. When some guy decides that he wants to grab the-lady-in-the-wheelchair and start pushing her around. Before I could even start screaming I heard:

"Oi! Fuck off! Do one!"

My bodyguards came to my rescue. Good times. Unfortunately it ruined our dance and destroyed any chance of applause from our audience.

I wish I could take those 3 dirty street drinking scum chums with me wherever I went. Unfortunately 2 live in Manchester and the other in Cambridge. I could've done with them on Friday night when at a Treasure Tones gig some creepy drunk guy decided that I was wonderful. *shudder*

Dust. High in fat? Low in fat? Dust?

2007-08-18T16:24:00.000+01:00

I really should be cleaning my flat. It looks slightly like a bomb has gone off in here.

I returned on Thursday after roaming round the country for a fortnight (Clacton, Leicester, a FOCUS project in Penistone which is the 2nd best named town in the country after Cockermouth, Leicester, Clacton, Manchester, Clacton) and just threw my stuff everywhere. Although to be fair the place was a tip before I went away.

The good news is though... I can't clean! I have been forbidden from taking any antihistamines until after I've been to the hospital on Monday, which means I can't be sending dust up into the air.

Last time I had an allergy test the nice staff at the Royal Throat, Nose and Ear Hospital failed to tell me that you're not supposed to take antihistamines for 3 days prior to the test (and I'm a bit thick so it didn't cross my mind) so they just stuck a load of needles in my arm for nothing. I didn't even react to being stuck with pure histamine.

So, having been antihistamine free for 24 hours so far I'm trying to avoid all allergens. I'm a bit afraid of leaving my flat because there are flowery things all down the street outside my building and they'll make me sneeze my little head off.

So, instead of cleaning, I'm going to take this opportunity to blog about shoes. I know it's a subject I've blogged about before, but after my footwear traumas of this week, I think it's a topic worth revisiting.

When going down hills in my chair I put my right foot on the floor and use it as a brake. This means I get through right shoes rather quickly (and still have an immaculate left one. If anyone knows anyone with no right foot and a size 4 left one that wants some shoes, I've got plenty).

At Kingswood Peak Venture (the site for this summer's FOCUS project) there was a wicked mean evil hill that I had to push up/roll down about a million times a day. The good news is that from pushing up it I now have the upper body strength of Arnold Schwarzenegger (can you believe I spelled that right first time?!?). However, from rolling down the hill and using my right foot as a brake, I completely wore through the sole of my right trainer. This made shoe shopping a rather urgent thing to do once I re-entered the real world.

Then on Monday night whilst in Clacton at my parents I had a somewhat unfortunate incident involving cat food and my left shoe. So Tuesday really, definitely meant New Shoe Day.

Shopping for shoes is usually quite fun. They're the one piece of clothing I can shop for and not come home crying about how I'm too fat. This was before I'd experienced shoe shopping in Colchester.

I scoured the town high and low looking for some Skechers. In the end I did find some in Barrats, but they were all hideously girly. And, well, I'm not.

I decided my best bet was Office. Amazingly I'm not banned from the chain of stores as the last time I went in a branch I was wired and doing a report for Five Live about inaccessible shops. And I did make them and their employees look rather stupid.

So, there I was sitting in the trainers section in the corner of the store browsing. Unsurprisingly seeing as how I was deep in the heart of Essex, most of the trainers on sale were white. This narrowed down my selection somewhat as I'm not overly proud of being an Essex Girl, and it's not neccessarily something I want people to know about me as soon as they look at me.

But, my selection got narrowed down even more. Once I'd ruled out the possibility of wearing white, most of what was left were velcro trainers. I sat there thinking "well, I can't buy velcro trainers, I'm too crippy. I'm gonna look like I've been given them by an Occupational Therapist because I can't tie my own laces." It was bad enough on the FOCUS project last week when we went 10 Pin Bowling and I had to wear velcro shoes because my feet are so small I'm not supposed to be old enough to tie laces.

I was left with a choice of 2 pairs of trainers. One black with blue stars all over them, and one black with pink hearts all over them (and a little skull and crossbones in each heart). I opted for the latter because they seemed more "me" - at the moment I seem to be going through a phase of wearing predominantly pink on my feet.

I informed the shop assistant of my choice and asked if I could keep my new shoes on, seeing as how the old ones were somewhat gross. The shop assistant wouldn't even go near them and made me put the old ones in the box. They're still in there actually. I'd planned on taking them home and throwing them in the washing machine to get the cat food off, and keeping them in case I ever found myself painting or doing something equally messy that required old shoes. But they've been sealed in that box for 4 days now, and I'm scared of opening it. I think I may just have to burn them.

With my new shoes on I rather spontaneously headed up to Manchester to see some singery songwritery types gigging. All night I got compliments of "Cool Vans!" But I couldn't muster up a very enthusiastic response.

The pain had already begun.

I spent the night up in Manchester sleeping on a friend's sofa. At one point I woke up in so much pain I decided to see if gravity would help my ankle and went back to sleep with my legs cocked sideways over the back of the couch.

My theory is that my foot has gotten so used to the nice, comfy arch support in my old Skechers, it now can't cope without it. Or it could just be a random coincidence that my ankle started hurting shortly after I put my new shoes on. After all, my ankle does hurt quite a lot quite often what with there not actually being a proper joint there anymore (it got completely smashed about 20 years ago and is now just a smoosh of bone not resembling a joint in any way).

I guess I've got to go shoe shopping again this week to find some with better arch supports. This time I will not be shopping in Essex.

2007-08-02T18:45:00.000+01:00

If I were president of the world I'd insist on people-washes at bus stops.

They'd work on the same principal as car washes - go through, get clean.

I'm sick of stinky people on public transport. Literally. Yesterday on a 31 bus on my way to a gig I nearly threw up on someone because he smelled so awful.

And it's not like I can escape and move to a different seat - what with being confined to the wheelchair space and all.*

One of the other comics last night nearly shared with me the reason why men who smell of wee do so. But then he decided to go to Leeds instead. I feel all lurchy having been left here.

I'd also force Cadbury's to make Creme Eggs all year round - that way I wouldn't get fat around Easter from scoffing as many as I can before they disappear from stores.

Yes, I know they now do the Dairy Milk with Creme Egg all year round, but they're just wrong. The Creme filling to chocolate ratio is all wrong, and... wrongness!

*Yes, I know there's nothing "confining" about a wheelchair, it's a tool of mobility and enablement. Only being allowed to sit in one spot on the bus however does have something of a confined feel. Yes.

2007-04-02T23:25:00.000+01:00

I was recently watching an episode of The Ellen DeGeneres Show (and when I say that I saw it recently, remember that here in the UK we get the show about 6 weeks behind it's original US air date) where Ellen was interviewing Jennifer Love Hewitt about Ghost Whisperer and the strange hauntings they've really experienced on the set of the show.

I have a theory about the ghosts haunting the show: I think the on set hauntings are a disability rights protest by people who are also now experiencing Spectral Intangibility Syndrome.

We've now seen 2 episodes where the ghost of the episode was disabled. First we had a ghost with autism, then a ghost with muscular dystrophy.

In the episode with the autistic ghost, Melinda explains that "we're all perfect when we step into the light." And, apparently, if you're autistic you can't be perfect the way you are. Before you can step fully into the light you have to stop stimming and make eye contact with the psychic who's done you a favour by reuniting your girlfriend with her mother.

Then there was the guy with Muscular Dystrophy who died aged 17. While he was alive, he felt he couldn't snog the pretty girl at school because "oh, I'm in a wheelchair!"

After death he masters the art of possession. He thinks that in the body of a recently deceased, but non-disabled, corpse he's in with a much better shot. Despite the rigor mortice and smell of rotting and all.

Now do you get why I'm convinced the ghosts must be those of ex-persons that the writers would describe as imperfect?

I started a discussion about the show and it's representation of dead disabled people on a messageboard, and someone replied:

"itd be a downer if on top of like, dying, i had to spend eternity with legs i had no idea what to do with. normal person legs that is."

But the show's writers don't seem to get that. They just think that corpses are sexier than cripples. Hmmmm.... Necrophilia.

OK, I mean, I know I'm not attractive, but that's nothing to do with my impairment - I'm just ugly. But even to people who do find the bent bones to be a turn off, I'd still like to think I'm sexier than a non-disabled blue body being eaten by maggots.

On a slightly random tangent, I once had a dream where I was a ghost, and I tried to go to the cinema. Being invisible, no-one would notice that I'd snuck in without a ticket. The only problem was that being a ghost I couldn't attract anyone's attention to get them to open the wheelchair accessible door - so no free movie for me.

I wish the Ghost Whisperer ghosts well with their demonstration. Viva la... oh, erm... perhaps not "viva", hey?

2007-03-19T19:52:00.000Z

Sometimes I wonder how walkies survive without wheelchairs.

I think today I may actually have died of embarrassment if I were not a wheelchair user.

I was in the supermarket. I stood up for a second to reach some cat food off a high shelf. As I sat back down in my chair I heard a tear, and suddenly became aware that my left buttock was colder than my right.

My trousers had ripped down the arse, just to the left of centre. And of course, I was wearing the most hideous pants I own underneath.

My immediate thought was one of relief. Relief that I am a wheelchair user, and could keep my exposed buttock hidden by sitting on it.

This got me thinking about how if I was even more crippled, I'd have been even better off; for if I had been unable to stand to reach that cat food then my trousers wouldn't have ripped as I sat back down. OK, I'd have had to sit there until someone walked past so I could ask them to pass the food. But that's a small price to pay for a warm bum on a snowy day like today.

Some people think that becoming a wheelchair user would be the most embarrassing thing in the world... Ever! Look at all those weirdo's who'd rather be housebound and fully dependent on others just because "Ew! I don't wanna use a wheelchair. I don't wanna look disabled. Gross!"

I would like to run up behind all those people with a knife and slash the back of their trousers to expose their crap pants. Once half of north London has seen their arse, I'd like to ask them then if they still think using a wheelchair would be more embarrassing.

The little girl who would never grow up.

2007-01-11T22:37:00.000Z

Today's Dictionary.com Word of the Day is bowdlerize.

I saw the following synopsis on the RSS feed this morning:

"To remove or modify the parts considered offensive."

I'm aware that the word is usually used in relation to literature and the like, but the wording of that synopsis reminded me of something I've been meaning to write about.

You've probably all read by now about the case of Ashley, the girl whose parents fantasy of turning their disabled child into Peter Pan was realised.

This poor girl has been on my mind a lot since the news story first broke. Her, and all the subsequent children who are going to be mutilated for no real reason except that their parents find the idea of a disabled child "cute," but a disabled adult "repulsive."

Don't believe that that's a mindset that exists? Compare the number of charities raising money to buy appropriate equipment such as decent wheelchairs for children compared to the number supporting adults. Compare the income of those raising money for cute kids compared to those raising money for icky gross adults.

Ashley's parents say:

"In our opinion, only parents with special-needs children are in a position to fully relate to this topic."

Thus completely disregarding the opinions and feelings of disabled people (including their daughter) because we're not as important as the non-disableds most crips crawled out of. A fairly typical non-disabled attitude of "I know about you better than you ever possibly could."

Despite the fact that Ashley's parents (who prefer to remain anonymous, presumably to protect them from claims of child abuse) want disabled people to be small, seen and not heard; unsurprisingly disabled people the world over are taking Ashley's side rather than that of her parents.

When a parent is prepared to mutilate and chemically alter their child to such an extent, it's obvious that the child isn't properly cared for. The parents state in their blog that:

She has a sweet demeanour and often smiles and expresses delight when we visit with her;"

and:

"We constantly feel the desire to visit her room."

Visit with her? You're saying the reason you butchered her was so she could continue to live with you, and you could "care" for her at home... yet she's not integrated into family life? You have to "visit" her? What sort of childhood is that?

They go on to say that as a result of the shrinking drugs:

"[Ashley can be] taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc)"

I'm sorry, but there's no reason someone of whatever size can't sit in the family room or go on trips. Wheelchairs and adapted vehicles so a passenger (and even a driver, though with the mental capacity of a 3 month old, I think it's safe to say that Ashley won't be picking up her driving licence any time soon) can travel in their chair have been invented. Hell, I'd have stolen my parents adapted van and given it to her parents if I could have prevented her from being put through this. (My mother reading this is probably now planning on removing my name as a driver from her car insurance policy).

And as for:

"She will continue to fit in and be bathed in a standard size bathtub. Since Ashley can’t sit, she needs to lie down in the bathtub. Without the treatment eventually she would stop fitting in a standard size bathtub."

If it was my child that I loved, I'd buy a bigger bath. I'd fork out to get a bath custom made if I had to (and, let's face it, it'd probably be cheaper than all the butchering, which I bet your medical insurance didn't cover).

These people are desperately clutching at straws to justify what they've done to their daughter. Unfortunately for them, their reasons are transparent. It comes back to disabled kids being cute, disabled adults not. They wouldn't want an unsightly adult that drools and wears a nappy in their family room, they'd be ashamed and embarrassed to take that adult on trips. But as long as she looks like a child and they can pass her off as one in public, she'll remain bearable to have around.

"To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemotherapy or radiation therapy)."

Erm, yeah... right. Forgive me, but aren't chemotherapy and radiation therapy life saving or at least life prolonging treatments? How much longer is Ashley going to live because you whipped out her uterus, whipped off her nawkes and fucked with her hormones. Oh, yeah, that's right:

"She is expected to live a full life."

And was before you started paying doctors to tamper with her.

"There was one legal issue that we needed to investigate related to "sterilisation" of a disabled person. Upon consultation with a lawyer specialising in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so."

I never knew about that piece of legislation existing in America. I'm relieved to read it does. I read on an internet messageboard about an Australian woman with the same impairment as me who, aged 4, broke her leg whilst on holiday and so went to a different hospital than usual. The doctor treating her leg told her parents "we might as well do the hysterectomy while she's here. You don't want a child like this menstruating." Her parents had the sense to scoop her up and run, but she reported that she'd heard that the same doctor had sterilised other young girls with OI, with disastrous consequences.

What does he think's going to happen if girls with OI are left in one piece? That we'll break our pelvis' changing tampons? That we won't be able to maintain a sanitary regimen if our arms are plastered? (I know from personal experience that it's possible to change a tampon even if your dominant arm is in a pot).

Coming back to Ashley, what about her future? What about the people that have woken up from a persistent vegetative state after being given sleeping pills? What about the people thought braindead who have proven that their brain is/was alert the whole time? What about all those autistic people who were thought for most of their lives to be a "vegetable" who turned out to be exceedingly bright when given the right communication tools?

I'm not saying that Ashley will one day suddenly "wake up" and "be normal". But medical advances happen every day, and what about the possibility that she "might"? What if she does and wants to marry and have kids. Shouldn't the law against involuntary sterilisation have protected her too?

"We also had concerns about Ashley's breasts developing and becoming a source of discomfort while [...] strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues."

They are aware that chest straps for busty ladies have been invented, right? I've seen them. I have a well endowed friend who has one fitted to her wheelchair. Originally she had fitted a chest strap designed for a man, and, as I recall, she did find it uncomfortable (and if I'm honest, it did make her boobs look kinda silly too). So, she had one designed for women fitted. Problem solved, cheaper and much less painful and intrusive than surgery. Did Ashley's parents consider any alternatives to a knife?

"she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts."

"The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain."

So, how is she going to communicate the pain of a broken bone? When she screams, how are you going to know what's wrong with her? As Flash points out "And how much research has been done into the effects of aging on a child's body? I expect it will bring its own problems sooner or later - osteoporosis for a start."

Her parents claim that:

"We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

But, erm, "no long term side effects?" The women who had that treatment will still only be in their 40s now. And did you research as to how many of them are developing Osteoporosis at that age? Or how severe it is in comparison to other menopausal and post-menopausal women?

Ashley's parents and doctors did at least have the sense to leave behind her ovaries, so she has her hormones which will help protect her against Osteoporosis, but even before she'd had her hormones messed with, she was still a high risk candidate for it because:

"We call her our "Pillow Angel" since she is so sweet and stays right where we place her - usually on a pillow."

Here's news for ya pal: Pillow Angeling ain't good for ya bones. It used to be believed that babies and children with Osteogenesis Imperfecta should be put on a beanbag or pillow, and just left there. Not touched, not encouraged to move, just left still. Until it was found that it was worse for the children concerned (though some doctors who haven't updated their medical knowledge since they became a doctor many moons ago still believe that. I understand that OT's specialising in OI still throw a lot of beanbags in the bin). See, movement helps increase bone density. Not moving doesn't.

I know Ashley doesn't have OI, but she's still immobile, and kids without OI benefit from movement, especially impact exercise.

I appreciate that Ashley won't be running any marathons, but her parents and doctors must be aware of the negative impact that immobility will have on her bones, and so surely they shouldn't be doing anything which may jeopardise her bone health even more? Especially given her inability to communicate where it hurts?

"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it."

If Ashley is obviously in pain, and you know it's because she's got her period (which you will, you'll see the blood when you change her incontinence pad), why not resort to a less invasive option, one women have resorted to for many years - painkillers.

"Ashley spent four days in the hospital under close supervision and, thanks to aggressive pain control, her discomfort appeared minimal."

So she's not allergic to painkillers then? So, how about some painkilling drugs in a liquid suspension mixed with her food and administered via her feeding tube? I've just taken some paracetamol (acetaminophen for any American readers) for period pain. Works like a charm. And even if it didn't, there are stronger painkillers available from your doctor, all less drastic than major surgery.

"Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse."

I'm so surprised I've not read any objections from feminists about this. It only seems to be disabled people offended by what's been done to this child. What her parents are saying is that the way to prevent a woman from being raped is to fix the woman, to remove temptation. Then all is right with the world.

If a child-like body makes a female unsexy, how do Ashley's parents explain paedophilia?

"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused."

So it's OK to rape a woman who can't tell on her abuser as long as she can't get knocked up? What about the risk of sexual transmitted infections? Or is it OK for a severely learning disabled woman already to lose her mind to syphilis?

If she were my child, I'd do everything I could to protect her from abuse (and I don't mean removing temptation by lopping her boobs off). I'd fill my house full of surveillance equipment if I had to so I could spy on her "caregivers".

It's not often I agree with the opinion columns by Dr Tom Shakespeare, but his article on Ashley is great. While most of the world is trying to convince midgety crips that we should be taller so we can reach the top shelf in the supermarket ourselves (back to my old peeve about the feta cheese) rather than making the world adapt to us, Ashley's parents want one of us shortarses. I'm kinda flattered in a way that according to non-disableds that it's now OK to be short - that short is the new tall.

"Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."

It all comes down to aesthetics. Disabled kids are cute, disabled adults are gross.

"Ashley is a beautiful girl whose body is developing normally with no external deformities."

Well, I'm about to drag my deformed, unsightly, disabled adult self into the bath. Night kids.

2007-01-02T17:37:00.000Z

One of life's great mysteries has been solved.

Whenever I tell people how low the IQ of the whole town of Clacton On Sea is, no-one believes me. They don't think it's possible for a whole town to be so thick, and for all the residents of the town to completely live up to the Essex stereotype.

How a whole town came to have such a collectively low IQ has been something that's puzzled me. I'm afraid to drink the water in case it's contagious.

But, now I know.

Me and the cat went to stay with the parents over Christmas. As usual I ate too much, watched lots of crap TV and had to listen to lots of old fogey music (my Mum bought my Dad an iPod for Christmas and guess who got the task of loading music onto it?).

I came home on the 28th because I had tickets to see Much Ado About Nothing in London that night. Having never seen nor read the play before, on the 27th I wanted to go shopping to get a copy of the text to familiarise myself.

"Mum, where's there a bookshop in town?" I asked. I've never lived in Clacton. My parents moved there after I'd moved down to London, so I don't know the town that well.

"I don't think there are any."

And she was right.

Suddenly all made sense. How can Clacton residents educate themselves in a town where no-one is able to access books?

My mother had bought me some new underwear, and one pair of knickers has "sweet enough to eat" written on the crotch. Like anyone would be, I was disturbed by receiving such a gift from a parent. Her defence was "I never really read it," which at first I didn't believe. But now with the knowledge that Clactonians are denied literature, I found myself believing her.

On the night of the 27th, my parents and I played some Scrabble. The first 4 games I won with ease. The fifth and final game was very close between me and Mother, right up until the end. But, I refused to lose at a word game to someone who lives in a town without books: I had a reputation to uphold.

During the course of the games, words I came out with included "sex", "horny" and "groin" which are perhaps words which should be avoided in front of the 'rents. But, in my defence I got "sex" on a double word score and my "groin" landed on a triple word score. I wish that was somehow a metaphor.

So, I returned to London and went to the theatre as planned. The fact that I spent the duration of the performance pondering how pretty Tamsin Greig is rather than paying attention to the plot is something I hold Clacton entirely responsible for: If Clacton had books, my IQ wouldn't have dropped several points over Christmas.

Happy New Year everyone.

2006-11-01T17:49:00.000Z

There was a small article in yesterday's The London Paper about Saw III and how since it's release in the UK, ambulances have been called to three different cinemas to treat a total of 5 people (4 women, 1 man) who've fainted during torture scenes in the film.

Obviously the paper brands the movie ridiculously scary, but, actually, a closer read reveals something else. The cinemas in which people have fainted are in Stevenage, Cambridge and Peterborough - leading me to conclude that there's nothing wrong with the film; East Anglians are just wimps.

Being of East Anglian descent myself, when I go see it I suppose I'd better wear a crash helmet in case I fall off my chair. I did after all faint at Watership Down aged 5.

Happy Halloween!

2006-10-31T20:44:00.000Z

As some of you may have already seen, this article that I wrote was published last Thursday.

On Saturday morning, I could've kicked myself - except the floor was wet, and to kick oneself involves standing on only one leg... and wet floors have a long history of slipping me over and beating me up.

I was volunteering on a FOCUS project over the weekend. On Saturday morning I rolled myself out of bed and dragged my sorry, sleepy self into the accessible shower room.

I had my shower, and the high poweredness of it managed to blast most of the sleep from the corners of my eyes. I got out, got dressed, and went to brush my hair:-

There was no mirror.

I had no idea what I looked like as I was trying to drag my fluffy locks back into a ponytail.

Just like a vampire.

Everyone knows that vampires cast no reflection, but something that's little known except for by wheelchair users is that accessible toilets rarely have mirrors in them; and if they do, they're too high to see your reflection from sitting in a wheelchair (well, except for the few that have a full length mirror right opposite the toilet so you get to see far more of yourself than you would like to whilst trying to do what you went in there to do).

Remember in Angel when the gang went to Pylea, an alternate universe where vampires can sunbathe and see their own reflections? Remember Angel's shock at seeing his hairdo for the first time in nearly 250 years?

That was kinda how I felt when I caught my reflection in a window late Saturday morning.

This was where the desire to kick myself came in "that's another parallel between vampirism and disability!" my inner monologue screamed in my ears. But, sadly, it was too late as the article had been published.

Damn.

Edit: This made me laugh.

This post may contain cheese.

2006-10-20T04:05:00.000+01:00

In the very early hours of yesterday morning, I received the most fabulously entitled spam Email.

The subject line was "cheddar attached."

I checked and double checked. The Email came with no free cheese. How fraudulent! The only attachment was a jpeg trying to get me to buy Viagra.

I'm really disappointed. I like the idea of cheese by Email.

Doris Delarosa, if you're reading this: I want the cheddar you promised me.

2006-09-29T17:27:00.000+01:00

This made me laugh very loudly, so I had to share it.

2006-09-21T18:19:00.000+01:00

Did you know that when Superglue starts to bond pyjama bottoms to skin that it burns?

The giant and very painful blister on my right knee is evidence of this fact.

In a way, I'm quite glad about the "Oh my god! My knee is on fire!" feeling, followed by an urgent need to detrouser. Because it did prevent me and my pink jammy bottoms with teddy bears on them from becoming permanently as one.

You would think that they'd make an adhesive as powerful as Superglue less runny so it doesn't drip everywhere, wouldn't you?

2006-09-20T02:40:00.000+01:00

Well, my last 2 posts have been about toilets. I might as well continue vaguely along the theme...

Actually, I should probably elaborate on my last post. This time, fortunately, the thousands of people in Trafalgar Sqaure were spared the sight of me weeing when the disabled toilet lock failed. Instead, I had the pleasure of opening the door on someone else. My manners are far better than the Brixton Academy employee who flung the door open on me, and I slammed the door shut immediately. In fact, after I'd done what I needed to and tried to leave, I couldn't get the disabled toilet door open. Some event planner had the bright idea of sticking the disabled portaloo with an outward opening door right in the middle of Trafalgar Sqaure. In the middle of a crowd of thousands.

Anyway...

My BettyCat has been ill recently. The poor little thing has had a poorly bladder. And what do cats do when they're not feeling too good in that area? Yup. Stop using their litter tray and just go wherever they happen to be.

My current disorganisation is all the cat's fault. I had to throw my To Do List whiteboard in the bin after she weed up it. "The dog ate my homework" may not wash as an excuse, but "the cat peed on my to do list" is entirely valid reasoning for not having accomplished all that I should.

By far the most frustrating of her makeshift litter spots was the curtain by the back door. Because it meant I had to take it down to wash it. And I'm 4'10". In a way I was glad the vet kept Betty in overnight that night, because her pointing and laughing at me (don't think she wouldn't...) while I struggled to extract the curtain rail from the (fortunately very low) ceiling would've been more than I could bear.

And don't ask why I didn't just take the curtain off the rail rather than taking the whole rail down. I was poor when I moved in here (nothing's changed in the last 18 months), and I found a curtain rail in Ikea costing the grand sum of £1. Cheapness comes at a price, and, in this case, the price is a design making it impossible to take the curtain off the rail without taking the rail down.

Prescription painkillers and a step designed to facilitate small children's access to a grown up toilet made it possible to eventually get the curtain down. But, of course, gravity was working in my favour too. Trying to get the curtain back up? Yup, gravity becomes more of a foe than a friend.

So, the curtain is still draped over the kitchen radiator, where it was spread to dry. Fortunately the glass on the window in the door is frosted, so passers by can't see me running around in my pyjamas (OK, like I can run, but, you know what I mean), but, the frosting doesn't stop the street lights from flooding my room with brightness throughout the night.

I find myself remembering a line from a Barenaked Ladies song... "who needs sleep?" and blogging at 3:15 in the morning.

As for the cat? The vet gave her anti-inflammatory drops, and she's peed nowhere but her litter tray since she got home. And annoyingly the little ball of trouble can sleep anywhere, anytime.

2006-09-16T23:38:00.000+01:00

What is it with Scissor Sisters concerts and disabled toilet doors that won't lock?

Edited to add: This was what happened last time...

2006-09-06T23:57:00.000+01:00

I've just finally gotten around to watching F*** Off I'm Fat.

Very near the start of the documentary, there's some footage of Ricky Grover doing some stand-up, and joking about being fat. I gigged with him once a while ago, and some skinny student started heckling him, and then disappeared for a piss.

So, Ricky got down off the stage, walked over to this kid's seat, and took the coat off the back of it. One of the issues explored in the documentary is how hard it is to buy clothes if you're fat. Needless to say, Ricky expected the coat to not fit, and look comical.

The kid came back in the room, and Ricky put on the coat. It fitted perfectly. Nothing could've been funnier as no-one in the room saw that coming.

The thing I found most interesting about the documentary was the parallels you can draw between fighting for fat rights, and fighting for disability rights. For instance, an issue that came up was the problem that restaurants try to cram as many seats into as small a space as possible. Which of course leaves little room for anyone oversized, whether that is because they are fat, or because they have a set of wheels that makes them take up more space than the interior designers ideal diner.

In fact, as an example of a restaurant that doesn't cater for fat people, they showed a shot of the Chinese/Thai/Vegetarian restaurant on Golders Green Road. A restaurant which I've felt slightly confused by in the past. This place has a really evil step to get in, another step down to the toilets, yet, once you've tackled those 2 steps, there's an "accessible" toilet. Someone didn't quite think that one through, did they?

Design issues were the focus of the documentary, and Ricky's appeal for inclusive design is something that most crips would be familiar with.

As part of the documentary, Ricky launched the UK's first "big loo." It featured a toilet tested to take the weight of someone up to a ton, and had a much larger than average seat, which everyone who used (even the skinnies) commented was far more comfortable than your bog standard (pardon the punning) loo seat.

Ricky appealed for more "big loos" around the UK, and summed up that segment of the show with the following quote:

Instead of segregating fat people, and having one big loo for them; why not make them all big loos, then you segregate no-one.

Slight flaw in that argument: Ricky had designed the "big loo" with 2 steps to get in, and a further step to mount the throne.

I'm feeling segregated by the "big loo" already...

2006-08-22T19:29:00.000+01:00

Yet more hospital appointments continue to take up vast amounts of time in The World of Lisy Babe.

While the staff at the Royal Throat, Nose and Ear hospital don't claim to have time travelling skills, nor do they expect me to demonstrate some, they still know how to confuse me.

I've had problems with my sinuses for most of my life. But in the past year they've actually become quite an impairment as I'm spending around 2 days a fortnight stuck in bed with the ability to do nothing except swallow more painkillers. Yesterday I finally got the chance to see an ENT specialist about this.

Upon arriving at the hospital, I was asked if I'd used Patient Transport Services to get there.

"No, I pushed here." I thought this was an obvious answer. If I'd said "I walked here," he'd have looked at me like I was A Mental (because apparently wheelchair users aren't allowed to use common parlance).

"Yes, but did you use hospital transport?"

I had no idea that patient transport vehicles were now fitted with treadmill type things so it would be possible for me to simultaneously push all the way there and catch a ride in an ambulance.

I do love the belief held by most members of NHS staff that it's not possible for crips to make their own way to hospital. Obviously, for some it's true. But when I had an endoscopy in March they sent an ambulance to pick me up (without even consulting me to find out if I needed or wanted one). I live a 10 minute walk/push/whatever from the hospital. There is no way in the world I'm going to be up and ready to leave the house an extra 2 hours before I actually need to leave just because someones made an assumption about my abilities. Thank you very much, I'll spend those 2 hours catching extra kip. And to add insult to insult, the patient transport people kept calling me "Mrs Lisa Egan." Now that I seriously considered making a complaint about. Mrs indeed.

Anyway, after that rather odd exchange with the receptionist, they sent me for a hearing test. I'd been complaining of sinus pain, not hearing loss. But the NHS does like to waste it's limited budget (like by employing people who can read the future) so I dutifully headed towards the hearing test dept and played along by pushing a button every time I heard a beep.

And, why? "You've had hearing problems in the past." Said a nurse who'd clearly only skim read my notes. Had he bothered to read properly he'd have seen that, actually, no. There's nothing wrong with my hearing. I have Auditory Processing Disorder. Telling me I have hearing problems is like telling a dyslexic that they're visually impaired. Idiot.

Fortunately the doctor I finally saw had a slightly higher IQ than most of the staff at the hospital. Though he did say "I see from your notes that you have Osteogenesis Imperfecta. Is that why you use a wheelchair?"

I was tempted to reply "No, my sinus pain is just so bad it's fucked up my knees." (But it still doesn't beat an anaesthetist asking Loudgirl "if she'd always had dwarfism?")

After sticking several things up my nose he informed me that I have Rhinosinusitis to add to my ever expanding list of diagnoses. This apparently does not mean that my sinuses have been invaded by Rhinos (though it often feels like I have a wee one growing in there and trying to burst out. I keep waiting for my face to explode in a similar fashion to John Hurt's stomach). Nor does it mean I have sinusitis of rhino-like proportions (though, again, feels like it). I think it simply means that whoever hybridised "rhinitis" and "sinusitis" got bored of the letter "I" and decided to throw in an "O" for some slightly variable vowel sounds. It's basically a fancy and mammalian sounding word for "chronic sinus inflammation." Which I could've told him I had on my way into the clinic.

Before departing from the hospital, I was sent to pick up a list of things to squirt up my nose to try and ease my suffering, and to have a blood test to see if there were any obvious causes for my sinuses to be so enraged.

Upon arrival at the blood test room, the phlebotomist asked me "Are you a difficult one?" As I sat there with my rear wheels wedged in the door frame I replied:

"Well, I can't even fit through your door for starters." Despite the popularity of the medical model of disability in certain quarters, apparently we wheelies don't need to be able to make our way around hospitals.

Anyway, I must go. The baby rhino in my sinuses is trying to make another break for it I think.

2006-08-14T00:07:00.000+01:00

Over the last week I've had the following exchange more times than I can actually count. I'm mainly posting this post as a public information announcement, so, should you ever meet me, you don't ask me the same bloody stupid question.

Me: I'm a vegetarian.

Them: Do you eat fish?

I know Kurt Cobain claimed that "It's OK to eat fish, cos they don't have any feelings."

He did also blow his own brains out. Remember that.

2006-07-30T01:42:00.000+01:00

Just because the appointment bookers in UCH's Maxillo Facial Unit can travel 3 days forward in time to know that I was going to fail to attend an appointment, they seem to think I have the power of time travel too.

Though, I wasn't planning on missing the appointment. But, who knows, maybe had the sound of the postman at 8am on June 19th (delivering a letter telling me I'd failed to attend an appointment 3 hours into the future) not roused me enough to get out of bed, I would have missed the appointment. So, it's possible that their on-staff mystics are right.

I was a little perplexed to receive a letter telling me that on the day of my operation I had to be on ward T14 at 7:30am. Now, anyone that knows me knows that asking me to be somewhere at 7:30am is asking a lot. Hell, most days I'm not even out of my pyjamas by 7:30pm. But the time they expected me to be there wasn't the aspect of the letter that left me befuddled.

What was confusing was the paragraph following the time they expected me to be there. The letter asked me "to call the ward between 9am and 5pm on the day of arrival to check there is a bed available for you."

So, I'm supposed to go an hour an and a half forward in time to call the ward to check that an emergency admission hasn't been dumped in my bed, before showing up?

I wish while I was in there, they'd taught me how to do that. Time travel would be fun. I'd never have to worry about oversleeping again. My alarm clock goes off, I want to roll over and go back to sleep for a few more hours? No problem. Just go back 2 or three hours and get that bonus kip. Lather, rinse and repeat as needed.

I'm incredibly jealous of that girl from Out of this World. Always have been. I wish my Dad was an alien (though, sometimes I think he might be. He's not allowed to eat grapefruit because it interacts negatively with one of the medications he's on. Part of his birthday present from me this year was some grapefruit shower gel. He asked my mother if he would be OK using it. I now think my Dad has a policy of washing from the inside) and I'd inherited from him the power to freeze time. Just how cool would that be? You'd never need to run late again! I think all punctually challenged people like me should be awarded that gift.

Actually, I think I should have the power to freeze time awarded to me as a reasonable adjustment under the DDA. It takes me longer to get anywhere in London than it takes non-disabled people (or disabled people whose impairment doesn't affect their ability to use stairs/escalators) because I can't get on the tube. This means that to get somewhere at the same time as non-crips, I have to get up earlier. Meaning I'm deprived of sleep. If I could freeze time with a clap of the hands, all would be equal in this animal farm we call London.

On the subject of being deprived of sleep, of course on that morning I had to be at UCH, I didn't bother to go to bed the night before. I was being given a general anaesthetic, it's not like I didn't have an opportunity to sleep during that day.

Or so I thought.

Many people wake up from a general rather dopey and spend the rest of the day sleeping, but, I've always woken up and immediately taken on behaviour resembling that of the Energiser Bunny. This was my first general since the age of 9, and I know the effects are often different on adults than they are on children. I was fully planning on sleeping like my mother does after an operation.

My mother is the woman who had her only child, by cesarean, under general anaesthetic. Instead of waking up and being overjoyed by the sight of her newborn bouncing baby girl, and being so excited by parenthood that she just couldn't get back to sleep; she took one look at me, said "Oh," rolled over and went back to the world of dreams. What a welcome into this world I got. "Oh." I suppose at least in her bleary state she didn't start calling me "Peter" which was going to be my name had I had a winky.

So, fully expecting to have turned into my mother, I was planning on catching up on some kip. I was so sure I'd be out for the count that I didn't even bother to pay the exorbitant fee to have the TV by my bed turned on.

Instead of course I woke up insanely hyper, with a major case of verbal diarrhoea (quite impressive given how swollen my mouth was having just had a bone saw in it). Much to the annoyance of the nurse overseeing the recovery room. Eventually she told me to lay down and shut up. You can see why with a bedside manner like that she opted to work with patients who are mostly unconscious.

The closest I came that day to proper rest was when I decided to change from blood stained hospital gown into my own pyjamas. Despite being rather squeamish, I was OK with the sight of dried blood on my surgical attire. I was even fine with the Lisa-juice covered blanket I woke up wrapped in. But, still, nighties aren't very me, I wanted my proper jammie bottoms on, so I decided to go in the toilet and get changed. Drip and all.

Changing from something with sleeves, into something else with sleeves, while you've got a drip in your hand is rather challenging. Still, I was confident I could manage it without having to ask a nurse to help me with all the tubes. As Julia Roberts once said "Big mistake. Big. Huge." Taking the drip down off it's stand to get it through various sleeves meant that my blood started flowing up the drip tube where gravity was no longer pushing the saline in the right direction. One notice of "Ooo, my blood's flowing in a direction it's not supposed to," had me laying on the floor, attempting to preserve what little consciousness I had left.

Actually, I wish I could go back in time and rethink that decision. How embarrassing.

Carry On... Hospital Managers

2006-06-19T09:48:00.000+01:00

Or, why I ♥ the NHS.

On one of my thighs right now, I have resting a letter inviting me to attend a hosptial appointment this morning at 11am. Obviously, this appointment hasn't happened yet, what with 11am still being an hour and a quarter in the future.

On the other thigh, I have balanced a letter, posted 3 days ago (on Jun 16th), claiming I failed to attend my appointment on June 19th (later today, not happened yet, stick with the program).

Honest. I couldn't make this stuff up.

2006-05-28T23:26:00.000+01:00

Last Saturday I gigged in a venue that is currently undergoing refurbishment.

It was interesting. The compere offered a prize to any audience member that could find a health and safety violation that the venue wasn't at the time in breach of.

Performing underneath exposed wires is a bit of incentive to do well. If they hate you, they could just throw water at you and watch you sizzle.

Anyway, possibly the most distressing part of the evening was going to the toilet. They'd removed the ladies toilet doors. (Don't bother asking why I didn't use the crip bog - it was a comedy venue. Don't be as daft as to think there might be one).

To offer some privacy for the ladies peeing, they'd provided curtains. Except, they were so short that if you were seated on the throne, they covered your face - and nothing else.

This made for an interesting alternate game of "Guess Who?" during the intervals...

"Are they bald?"

"No."

"Do they have short hair?"

"Yes."

"Are they blonde?"

"No."

"Any piercings?"

"Yes."

"I think it's Gilly."

In the 2nd interval an audience member informed me that the toilets were full of women with their Sun-In dying their minges "because, well, you've got to with those curtains."